Needs Assessment for the Canadian Virtual Hospice

Health and the Information Highway Division, Health Canada - 2002

Table of Contents

• Executive Summary
• 1. Introduction
  • 1.1 The Initiative
  • 1.2 Understanding the Needs
  • 1.3 Study Methodology
• 2. Needs Assessment Findings
  • 2.1 What Patients and Families Told Us
  • 2.2 What Professional and Non-Professional Caregivers Told Us
  • 2.3 What Would Help Differentiate the Site?
• 3. Literature Review Highlights
  • 3.1 Health-Related Web-Based Applications Assigned Importance
  • 3.2 Web-Based Health Information Receives Mixed Reviews
  • 3.3 Criteria Established for Quality Web-Based Health Information
• 4. Considerations in the Designs of the CVH Web Site
  • 4.1 Networks and Their Functions
  • 4.2 General Considerations
  • 4.3 Functionality
  • 4.4 Information Categories
  • 4.5 Policy and Legal Considerations
  • 4.6 Audit Trail Provisions
  • 4.7 Web Site "Seal of Approval"
  • 4.8 Estimated Volumes
• 5. Next Step
• 6. Conclusion
• Appendix A: Focus Groups, Interviews, and Teleconferences
• Appendix B: Potential Future Interviewees and References
• Appendix C: Bibliography
• Appendix D: Canadian Virtual Hospice National Executive Committee

Acknowledgement

In submitting this report, we wish to acknowledge and thank the many persons across Canada who assisted our consultants and allowed us to carry out this needs assessment project in a timely and effective manner. We also want to thank the many stakeholders (patients, their families, and professional and non-professional caregivers) for their time and for allowing our consultants to interview them. We were especially pleased and appreciative of the way in which stakeholders openly shared their views and information with us, and contributed many ideas and suggestions for the Canadian Virtual Hospice. We were treated with welcoming hospitality and accommodated very well at all interview venues. We very much appreciate the efforts and support of the CVH Project Manager, Anita Stern, of the Project's Principal, Dr. Harvey Max Chochinov, and of all other members of the CVH National Executive Committee who worked with our consultants through the various steps of the study to help make this project as relevant and valuable as possible to all concerned.

Executive Summary

A group of Canadian palliative health care professionals have dedicated themselves to the creation of a unique web site to serve Canadians with a vested interest in end-of-life care for persons living with a terminal illness. The site is to be known as the Canadian Virtual Hospice (CVH). The group overseeing its implementation is the Canadian Virtual Hospice National Executive Committee.

Recognizing that the CVH must be founded on the specific needs of the stakeholders it is intended to serve (i.e., the terminally ill, their families, and their health care providers), the Committee commissioned a cross-Canada study to assess the functions the site should serve and the content it should provide. This needs assessment was conducted in the spring and summer of 2002. The findings are summarized in this report.

The gathering of information for the needs assessment took the form of individual and group interviews, survey questionnaires, and phone conferences with a sample of patients and their families, and with a representative group of professional and non-professional caregivers (recognizing, of course, that family members were also caregivers).

Patients and families cited that the main reasons they would use the CVH site would be to find trustworthy information specifically relevant to their situation, and to connect with others facing the same illness. They felt the site could play a key role in empowering patients and families in the process of care, and in capturing their thoughts and experiences. It could be used as a tool to educate both themselves and their professional caregivers, and to facilitate access to appropriate community resources and support facilities. They also indicated a requirement for the site to serve the needs of young children and teenagers (whether as patients or members of families dealing with a terminal illness).

Topics deemed most appropriate for inclusion on the site included frequently-asked-questions (FAQ) by subject area, information about commonly prescribed medications, treatment and pain management options, recent research, and information about hospice and palliative care services. An "ask the expert" feature is expected to be popular, as a majority of respondents indicated that they would use such a feature.

Professional and non-professional caregivers told us the site could be used to better explain palliative care to the public, for a broader understanding of the role of palliative care. They saw the site as potentially helpful to them in identifying resources that could help their patients, in accessing research information, in accessing information on continuing education, in networking with other professionals in palliative care, and in potentially easing some of their workload.

Study participants conveyed many other insights, including the need for the CVH to:

• facilitate use and legibility
• be credible (accurate) and mitigate misinformation (harmful information)
• be accountable, and administered by a formally-established secretariat
• clearly post abundant, appropriate disclaimers
• assure privacy and confidentiality, and provide proper monitoring¹
• address all degenerative and end-stage diseases, not just cancer
• be geographically-specific and relevant²
• address cultural diversity
• have "balance" in the information provided, to avoid information overload
• use consistent terminology
• differentiate between national and regional components
• authenticate users
• have an evaluation system integrated into the site
• receive feedback, suggestions, and input from users

Many saw the site as an important means of exercising advocacy, both in terms of helping patients and families navigate through the "care system," and in facilitating the bringing forward of encountered issues and challenges to appropriate parties in authority.

Some patients, family members, and professionals felt the CVH should be developed as a pilot site first; that it should start small and evolve with time, under measured and controlled expansion.

As a general outcome of this needs assessment, it was confirmed that the "architecture" of the proposed CVH site should parallel the following nine distinct, but inter-linked, "compartments" (shown in order of stakeholder-perceived priority):

1. mutual support
2. education/information
3. professional continuing education
4. community resources
5. research
6. professional-to-professional consultation
7. administrative "corner"
8. product resources
9. personal space

Appropriate consideration will need to be given to designing the site for ease of accessibility and navigation, individualization/personalization of site interactions, managing content, housekeeping and maintenance, inter-user and feedback communication, linkages, categorizing information sets, accommodating policy and legal requirements, and providing adequate audit trails.

The next major step in the development of the CVH will be to produce the detailed specifications and design for the site.

The following sections describe the assessment findings in more detail. An introduction to the CVH initiative and the needs assessment, and a description of the study methodology are followed by a description of needs identified by patients, families, and professional and non-professional caregivers. Design considerations, and a section listing the immediate next steps required in the evolution of this web site complete the report.

1. Introduction

This report highlights the findings of a study, undertaken in the spring and summer of 2002, to evaluate the needs of the Canadian Virtual Hospice, a unique web site to be designed and created for Canadians with a vested interest in end-of-life care for persons living with a terminal illness. The purpose of this report is to identify the requirements and the derived conceptual design for such a web site, and to help advance the process of realizing it.

1.1 The Initiative

The Canadian Virtual Hospice (CVH) is the initiative of a working group of palliative health care professionals from across Canada dedicated to finding new and innovative means of providing support and resources to Canadians needing end-of-life care, to their families and friends, to their professional and non-professional caregivers, and to researchers in palliative care. This initiative has received wide, enthusiastic support from stakeholders who range from health care professionals caring for palliative patients, to patients and families living with a terminal illness, from community facilities to the federal government.

The CVH is intended to be an Internet-based web site and interactive network that will help enable mutual support and facilitate the exchange of information, communication, and collaboration between and among health care professionals, palliative care researchers, the terminally ill and their families. The target population is Canadians living with a terminal illness and those caring for them.

It is expected that the CVH will play a major role in the context of palliative care in Canada. It should:

• Complement existing national, regional, and local programs and palliative-focused web sites, not substitute for them.³
• Supplement programs or services that are not currently being offered or are unavailable due to economic or geographic constraints.
• Help to offset workload from an already overburdened group of family physicians and palliative care specialists.
• Play an important role, to the extent possible, in helping to maximize funding and resource opportunities allocated to palliative care and research.

Finally, and most importantly, it must meet an important need of a large group of Canadians seeking support in a most difficult and often demanding time of their lives.

1.2 Understanding the Needs

Building and deploying the CVH is not something that can be accomplished overnight or in a compressed time frame. It requires due diligence, thorough thinking and design, "construction" in stages, and phased implementation. Most importantly, it requires the input of those very individuals who are most likely to benefit from access to, and use of, the CVH. That is, the CVH's design and structure must ultimately be founded on the specific needs of those who are intended to be its primary users (i.e., the terminally ill, their families, and health care providers).

To that end, the National Executive Committee overseeing the development of the CVH initiated a needs assessment project to acquire a more thorough understanding of the relevant information and service requirements of persons for whom the CVH is to be developed.

This needs assessment project used a multi-prong approach of information gathering methods.

• Focus group sessions and interviews were held across Canada with representative persons dealing with palliative care issues (for a listing of sessions and interviews conducted, please refer to Appendix A).
• Patients, family members, professional and non-professional care providers participated in, and provided valuable input/insight to, the needs definition. Some provided personal written briefs and copies of previous studies for our consideration.
• Teleconferences were held with professional care providers and researchers from across Canada (for a listing of teleconference interviews, please refer to Appendix A).
• A series of questionnaires aimed at the three primary target user groups were developed. The questionnaires were made available through the Internet, where the public could access them and respond to them.⁴ As of August 31, 2002, we had received close to 700 completed surveys.
• Relevant literature was reviewed to identify best practices.

This report is the culmination of that effort. It describes the needs tabled by potential users and serves as a descriptive outline needed by system designers by providing the following information:

• functions the CVH will be expected to perform
• information subjects/categories to be accommodated
• research and evaluation criteria to be built-in
• operational (design) considerations

1.3 Study Methodology

The methodology used to accomplish the CVH needs assessment followed a progressive, structured, step-by-step approach and workplan.

The most significant component of the study was the communication with the many stakeholders in order to develop an understanding of the requirements and issues they had with end-of-life care. These would be correlated into a representation of "needs" that the CVH could potentially, within reason, help address or meet (keeping in mind that the CVH could never be the panacea for all the issues and challenges stakeholders encountered in end-of-life care).

Information gathering for the study took the form of individual interviews, group interviews, survey questionnaires, and phone conferences with patients and their families, and with professional and non-professional caregivers (acknowledging that family members were also caregivers). A list of stakeholder groups who participated in the information gathering activities of this project is provided in Appendix A. In total, 7 personal interviews, 11 focus group sessions or group interviews involving over 110 stakeholders, and close to 700 survey questionnaires were completed.

Based on this communication and gathering of information, the consulting team was able to present findings and specific suggestions for moving forward to the CVH National Executive Committee.

In order for a finding to be included in this report, it would have had to be corroborated by others in the same or different information gathering session(s) or instrument(s).

The following major steps were carried out in the study:

Orientation: Discussions were held with the CVH National Committee Chair and the CVH Project Manager (a member of the CVH National Committee, appointed by the Committee) to familiarize them with the proposed approach and workplan for the project. These discussions were also used to confirm scope and planned project activities.

Communications Strategy: A strategy and supporting documentation were developed in conjunction with the CVH Project Manager by soliciting participation from representative stakeholders across Canada and disseminating information to them. This communication documentation included informational packages that were distributed to all invited participants.

Ethical Approval and Consent Forms: Ethical approval for the project was received from McMaster University's Research Ethics Board. All participants in the needs assessment were asked to complete a consent form.

Background Material: Our consultants reviewed background material provided by the CVH Committee and other stakeholders, and material derived from literature research, in order to obtain a broad knowledge and understanding of needs and of the current state of web site development in this field. A representative list of the background documentation read for the purposes of this project appears in the Literature Review Highlights chapter of this report and in Appendix C. Stakeholder Interviews and Workshops: Key-informant interviews and focus group sessions were conducted across Canada with many stakeholders (please see list in Appendix A) to obtain answers to questions about needs, priorities, etc. Focus groups lasted an average of three hours each and included an average of twelve participants. For the majority of focus groups, discussions were recorded on audio tape. As participants may have felt some degree of discomfort in discussing the topics of palliative care and terminal illness, best efforts were undertaken to provide a most comfortable setting and atmosphere to support the discussion. Participants were advised that they could choose not to participate in potentially uncomfortable discussions or could leave a session at any time. Prior to participating in focus group sessions, persons invited to the sessions were provided with an informational package. The package contained a cover letter explaining the purpose of the needs assessment project, an overview and introduction to the session, a list of questions that would be covered during the focus groups, information about the CVH, and a consent form. In some instances, the organizing group sent thank you cards to individuals who participated in the focus group sessions.

Online Surveys: To provide the opportunity for as many potential stakeholders to contribute their thoughts/comments on the CVH to our consulting team, including those who could not participate in the interviews and focus group sessions, four sets of bilingual questionnaires were developed with the objective of making them accessible on the Internet. The questionnaires were circulated to members of the National Executive Committee for final approval. Palliative care and other health care organizations were approached with requests for posting hyperlinks to the (bilingual) surveys on their existing web sites. We also developed a skeleton site on the Internet, which allowed people to complete the surveys on that site. A variety of means were used to help promote the surveys.

Data Collected Review: An analysis was carried out on the responses to the online surveys.

Draft Report: A narrative description of the CVH needs assessment findings was prepared in the form of this report for initial review by, and for comments from, the CVH National Executive Committee.

Final Report: The revised draft report, incorporating comments from the CVH National Executive Committee, was produced and submitted to the Committee.

2. Needs Assessment Findings

A national survey of Canadians, conducted in 1997 by the Angus Reid Group showed that only 53% of respondents had heard of hospice palliative care, and only 30% could define palliative care. The same survey reported that only one out of five people with advanced illness is actually receiving hospice palliative care in Canada.

Palliative care has not yet achieved a level of sufficiently high priority in Canada. Interviewed key informants indicated that only 15% to 30% of Canadians have access to palliative care, depending on the region in which they live. A "completeness" of services is lacking, whether it is home care support, 24/7 access to services, access to respite care or other services.⁵

Nearly three million Canadians already care for someone with long-term health problems. Statistics Canada stipulates that within the next generation, one out of every two Canadians will be a caregiver. Only 6% of Canadians feel that they could adequately care for a loved one facing a life-threatening illness without outside assistance. Even within urban centres, resources are limited.

Against this background, the CVH could offer a new means to better serve Canadians by providing the general population with increased information services and by enhancing the abilities of health care professionals to care for palliative care patients and their families.

2.1 What Patients and Families Told Us

2.1.1 What Patients and Families Told Us in Person

We asked patients and families to tell us what they consider to be their top needs in dealing with a terminal illness. They described the following areas as the ones they would like to see emphasized the most, and to which the CVH could provide evolutional and developmental support.

Dignity and Respect

Patients and families felt that a top requirement for them is to "treat the person, not just the disease." This meant honouring the life that is within the person living with the terminal illness, acknowledging the presence of that person (not speaking about him/her in the third person), recognizing how much a patient does or does not want to know about his/her illness, understanding what a dying person can and cannot do, being told what to expect, and respecting the (family) caregiver who needs to be seen as human and real.

Patients and families wondered whether the CVH could help play a key role in empowering, in any way possible, the patient (giving some control), recognizing that each patient situation will be different and changing over time. For example, could the information provided by the CVH support the patient's participation in the design of a process of care, express his/her wishes, facilitate consents and consultations related to medication and the choice of palliative care?

Effective Listening

Another top need was for professional and non-professional caregivers to listen to the people who are dying and to the family members and friends who are caring for them. In other words, to be able to gather their thoughts, comments, experiences, and input.

Education for Professionals

Patients and families cited a need for more palliative care professionals and for education for these professionals, one which would provide for a better (more informed) understanding of the:

• special area of palliative care, with the emphasis on care, not cure
• importance of listening and speaking with people rather than to people
• need for accuracy and care in conveying messages of terminal illness (the example was given of a woman who was told she had 3 months to live, but lived for 2.5 years before succumbing to her illness)
• need for a family physician to be able to "let go," i.e., to turn the patient over to palliative care

Something should be learned from every death and passed along to professionals, so that others could benefit from the lessons learned.

Some suggested implementing a national scorecard of palliative care effectiveness as a means of advocating for improvements.

Education for the Public

Another strongly felt need was to focus not just on preventing death, but on making death easier. This could be done by educating the public about death and dying - demystifying the death process - while recognizing that there may be issues of cultural diversity and other issues that need to be considered in delivering this education. Participants suggested this would help to better prepare individuals and families, as it is easier for them to deal with the passing of a loved one if nothing has been hidden. Those who have gone through it can tell others.

Education is also needed on grieving, keeping in mind that everyone experiences grieving differently and at different times.

Care Support

Patients and families cited the need for good home support and home care, for medical visits at home, and for support to be available 24 hours a day. They cited the need to be able to order groceries and other services (repairs, transportation, etc.) from home, and for alternatives in access to resources agencies (so that patients and families do not feel "cornered," with no other options, if they are dissatisfied with a particular resource agency).

Emotional, Spiritual, and Mutual Support

Emotional, spiritual, and mutual support ranked among the top needs. This included the ability to talk with others who have experienced loss, to understand internal coping strengths that individuals have, to reduce a caregiver's isolation, and to provide/receive companionship. Emotional support, particularly, was said to be difficult to obtain.

Some expressed the need for access to psycho-social support (especially access to professionals in mental health and spiritual care), for local grieving support networks and continuation of support after a loved one has died, for the ability to exchange letters with "pen pals," and/or the ability to discuss sexuality more openly.

The CVH was seen as having the potential to offer some of this support by providing the patient with a "virtual family" with whom to chat and exchange information (especially in circumstances where the patient has no family), and by facilitating access to sites that offer solace, poetry, inspirational reading and music, entertainment, and a place to vent.

Financial Support

Patients and families cited the need for knowing what financial resources are available (including contacts and phone numbers), what charity and palliative benefits packages are available, and what/whether any income security programs exist for family members who have to quit their jobs to care for loved ones.

Effective Interaction (Communication)

Patients and families emphasized the importance of good continuous and contiguous communication among all members of the care team, including direct interaction with physicians and the team treating the patient, regarding measures being taken and the course of treatment being (or to be) followed. They wanted to see more coordination and more of a team approach to transferring information among team members (stating that different information would sometimes be given at different times from different team members).

To have the family or friend caregiver know that he/she is being heard as the patient's advocate was also highlighted as an important need.

Access to Information

Patients and families cited a general lack of information at all levels, and a definite lack of information on available resources. They stated that information that is available is usually provided or received late and is no longer necessarily pertinent. Some patients felt they are left very much on their own, to fend for themselves, as far as information and some care are concerned.

Patients and families strongly expressed the need for:

• simple, succinct, viable, and trustworthy information (validated and pertinent to Canada)
• access to a list of palliative care physicians and other resources
• information on how to care for a patient (how to give a bath, assist to the washroom, how to turn, how to move, etc.)
• a list of questions to ask professional caregivers
• prognosis information, including problems or complications that could occur, and how to recognize them
• advice on counseling children, and whether children should be present during last stages of dying
• information about medication (timing, side effects)
• specific information to be received at time of death
• information on available funeral services

Other categories of information deemed to be important included information on:

• advocacy for the caregiver, including self-help suggestions for the caregiver on how to look after himself/herself
• workshops and other education for caregivers, and identification of the "ideal" curriculum⁶
• library resources providing relevant books, tapes, pamphlets, and products
• hospices, what they offer, the age groups they serve, their rules and regulations (e.g., Do they allow pets? Do they have open visiting hours?)
• where to apply for handicapped parking passes
• equipment resources (e.g., wheelchairs, IV poles)
• plays and movies whose topic is dealing with themes of cancer or other diseases
• diseases, treatments, and nutrition
• wills, power of attorney, probate logistics after death
• lists of potential companions (e.g., travel partners)
• accessible volunteer programs (e.g., transportation)
• available resources on how to attend to the patient at home as the disease progresses

If such information were to be made available through the CVH, patients and families would like to see the information appropriately categorized for quick location and retrieval. A "package" or "kit" of information should be made available as soon as diagnosis is known. A regional map would help, by allowing users to "click" to the location where they need the help/resources.

Some suggested that the "packages" or "kits" include information maintenance checklists that could be easily printed out for the patient or the family, and in which they could:

• record lists of key contacts (e.g., family physician and specialists phone numbers, palliative care coordinator, assigned home care workers, etc.)
• maintain a list of goals of care, and last time these goals were reassessed
• maintain logs of what is happening, and sharing this information with medical providers
• reference what to do/what steps to go through when death occurs

The CVH was seen as a potential link to hospices, providing a virtual and visual experience of the hospice on the web.

Patients and families asked that consideration be given to the implementation of computers (capable of accessing the CVH) in information centres such as hospital cancer wards⁷, other care centres, shopping malls, libraries, and community centres. At the same time, they stressed the importance of accessibility to resources by telephone (not just via the Internet/email) and of finding ways to disseminate (distribute) resource contact information widely.

2.1.2 What Patients and Families Told Us through Surveys

We conducted online surveys of patients (29 responded), families (79 responded), and others (95 responded) who are dealing or living with a terminal illness. Their responses point to a need for succinct, user-friendly, and easy-to-find factual information related to treatment options, pain control, meeting day-to-day needs, and finding appropriate care givers and support groups. Following is a summary of findings from these surveys:

• Most commonly cited reasons for communicating with others through the CVH web site were to find information and to connect with others facing the same illness. Few patients expressed concern about using the CVH site as a source of mutual support and information. Only one person (a patient) indicated that he/she would not use the web site to contact others or exchange information.
• Topics that respondents felt would be most appropriate for discussion on the web site were very factual in nature. They included treatment and pain management options, recent research, and information about hospice and palliative care services. "Softer topics," such as spiritual and emotional support, as well as remembrance wishes, were thought to be least appropriate.
• An "ask the expert" feature would be popular. A majority of respondents indicated that they would use this feature. This also links to the strong support for the factual topics listed above.
• Patients appear open to having other people participate in mutual support chats. Only 30% of respondents indicated that only patients with the same or a very similar illness should participate. Patients felt strongly that family members should be allowed to participate and, to a lesser extent, friends and professional caregivers. Families and friends felt it would be appropriate for them to participate in (online) chats with other patients and their families/friends.
• Patients, families, and friends did not express strong support for using the CVH site to post "final thoughts." About half of the patients, and one third of the families/friends said they would use this feature. Others were unsure or specifically indicated they would not use this feature. Families and friends feel that access to the final thoughts should be well controlled. A minority indicated that the general public should have access.
• The majority of patients (just under 77%) indicated that they are currently using the Internet to find information related to palliative care. Most respondents indicated that they find the information through a search engine, with less than half (43%) indicating that they are referred to a site by a caregiver.
• Other than the Internet, the most common means of obtaining information related to palliative care was through the physician (47% of patients), followed by books (43%). This is important in relation to the fact that less than half of respondents indicated that their physician had referred them to Internet sites; most respondents were finding sites by using Web search engines.
• Although 77% of patients indicated that they used the Internet to find palliative care information, only 33% indicated that they would recommend a palliative care web site. This might indicate that sites that are currently available are not meeting the majority of patients' needs.
• The most popular types of educational material and information that should reside on the web site, according to respondents, are frequently-asked-questions (FAQ) postings by topic area, as well as information about commonly prescribed medications. Scientific journals were the least popular category of educational material and information that respondents wanted to see on the web site.
• Almost half of the respondents indicated that they would find audio-visual information helpful.
• In terms of community-based palliative services that should be indicated on the site, the most popular were palliative care support groups, followed by hospices and palliative care physicians, home care services, and counseling. The least popular were spiritual care services, followed by holistic medical practitioners.
• For other community-based services, patients indicated support for information about social assistance programs as well as medical equipment suppliers, transportation services, home-making and meal preparation services. Less popular services were those involving "longer term planning," such as legal services and tax planning. Emergency child-care services were also among the least popular, but this may be due to the age of respondents (i.e., many may be at an age where they are no longer caring for children).
• A minority of respondents indicated that they would consider purchasing a product through the CVH web site.
• The majority of respondents indicated that there was a need to place palliative care information and services on a web site.

2.1.3 Some Additional Thoughts from Patients, Families, and Friends

Patients, families and friends provided us with the following additional insights and views regarding the proposed CVH web site.

They said the site should focus on patients and families, not providers. It should be open to all and recognize the presence of various cultural groups. It should not be ethnocentric, and should possibly allow the use of multiple languages. They suggested families should be invited to serve on the CVH Board of Directors, to prevent a solely professional caregiver focus.

We asked patients and families if they considered any information or functions that should not form part of the CVH. The majority felt they needed to be able to speak openly and freely, and that information placed on the CVH site not be censored, especially if that information could be of help to someone else. They indicated that the site should allow for an information exchange category related to the "political/policy" aspects of palliative care, and for exercising advocacy on behalf of palliative care. The site should give users an opportunity to provide suggestions and feedback to the CVH's administrators.

Many were opposed to advertising on the site, but suggested that site "sponsorship" by other parties should be allowed and links provided to the sponsors' sites, so long as sponsors had no control over content. Many did not like the idea of the site establishing links to product suppliers. They were concerned about the potential "infiltration" of publicity (e.g., publicity about new medications) onto the site.

Some concern was expressed regarding the use of chat rooms, as it was thought certain people might misuse this function to gain (in a negative sense) from the circumstances of participants, or provide unqualified advice that could adversely affect the recipients. On the other hand, others indicated the need for chat rooms, as they may give some people the only opportunity to talk to others. Patients and families suggested introducing some form of formal authentication of chat room participants. Several family members suggested a separate chat room would be needed where families - but not patients - could chat. Also mentioned was a bereavement section for families.

Patients and families are seeking a definition of palliative care that is simple, but one which not only defines care from the start (at time of diagnosis) but also incorporates other serious diseases (e.g., heart or lung disease) from which a person could still die and about which a person could have many questions, similarly as someone with a determined "terminal" illness might have.

Other "sections" or "functionality" that patients, families, and friends suggested for inclusion on the site are:

• A "self-help tips" section. This section would include suggestions of questions to ask your doctor, ideas for those working with a patient who has Alzheimer's disease, and other ideas.
• A phone number that would connect the patient or family member with a real person (not voice mail), for when the patient is at home and his/her medical condition deteriorates or changes.
• A section for those visiting the terminally ill, with suggestions on what to say, what to bring, and what the appropriate visitation protocols are.
• A section that would facilitate donations, on a local basis, of items such as special devices and equipment, and provide information on where to donate or recycle such items.
• A section on temporary care services for animals/pets, for when the patient is in the hospital or is unable to walk the animal.

Some felt that the CVH should be a pilot site first, that it should "start small" and evolve with time. Expansion, if any, should be controlled and should be carried out in a measured and thoughtful way. From the very beginning, stakeholders and users should be made aware that the site will evolve.

All agreed that the CVH site's content must be written in plain language so that the majority of people would understand it.

2.2 What Professional and Non-Professional Caregivers Told Us

2.2.1 What Caregivers Told Us in Person About Patient Needs

We asked professional and non-professional caregivers to tell us what they consider to be their patients' (clients') top needs in dealing with a terminal illness. They conveyed to us the following needs.

Understanding the Nature of Palliative Care

Many felt that there needs to be a greater public awareness about what palliative care is, and that patients and families need a clearer explanation/understanding of such care. Most caregivers supported the concept that palliative care begins when a person is diagnosed with a terminal illness, rather than when that person is bedridden or in need of intensive care. Palliative care is important along the whole trajectory of a terminal illness. Some caregivers suggested the CVH consider using the definition offered by the Canadian Palliative Care Association:

"Palliative care is defined as active total care focused on quality of life and alleviation of symptoms offered to people with terminal disease and their families when cure is no longer feasible."

Quality Emotional Support and Respect

Providing emotional support should begin at the time of diagnosis. Patients and families should be helped to understand what the diagnosis is and what they need to do, and their principal concern about being abandoned must be addressed at this time. This concern usually manifests itself in worries such as whether a physician(s) will continue to look after them, once he/she knows that he/she is not able to "cure" the illness. Assurance of continuity of care is deemed very important.

Professional and non-professional caregivers echoed patients' need to feel safe and cared for, to know they are not alone, that they have someone to talk to about thoughts, feelings, and end-of-life concerns. Patients need to be heard, to feel understood, and they need to be helped with decision making. Patients want someone to be there to listen to them and "hold their hand," and to show compassion and empathy. A patient needs to be recognized as a unique person with unique characteristics. Patients want to have questions answered frankly and honestly, with a clear explanation of the situation and a clear articulation of options.

Patients worry about being a burden to loved ones. The need for emotional support extends to the family/friend caregiver who needs to be shown how to deal with adverse social behaviour in a dying patient. The family/friend caregiver also needs to be provided with periodic reminders to look after himself/herself, and with information about coping with changes. He/she must be given the ability to create/maintain a diary or events log, helped to cope with stress, and provided with grief support after death.

Practical Support, including Help with Financial and Legal Planning

Patients and families worry about very practical things, such as making sure the bills are paid, the kids are picked up from school and events, etc. They need to plan for family support and have the practical help to properly put financial and legal affairs in order (i.e., finish the business of life, from a practical point of view). They need to know what plans have to be made, and create a checklist of "to do" items. They need assistance with legal and financial forms. They need to know what financial benefits are available from government and other agencies (e.g., community assistance funds), and where to apply for them/where to go for financial resources assistance. They need to have explained the role of public guardian or trustee offices, and so on.

Families need to know where (e.g., Canada Customs and Revenue Agency) to access forms, in regard to the deceased person, that need to be completed.

Timely Access to Expertise and Care

Patients and families need to know that they have competent caregivers. They seek "advanced care planning." A part of this "advanced care planning" is knowing which medical team is available and having the individual contact phone numbers. Patients and families need to know that members of the team are accessible on a timely basis, and they need to have one contact/number through which all care is coordinated. Patients and families need to know that they have a knowledgeable support team that can answer their questions and address their needs, and that the "consistency" of the team remains throughout the period of care, i.e., that continuity of care has been planned for.

Patients and families are looking for 24/7 access (including after-hours crisis support), timely response, and home visiting by a physician (not always possible or practical).

Access to Clinical Health and Related Information

Patients need easy access to information about their illness (diagnosis and prognosis), they need to understand what is happening, what to expect, and how their needs will change as the disease progresses. They need to understand the process of dying, what it will be like. Many stressed the importance of being provided with information, not advice.

Patients need access to audio/video tapes and reference books on palliative care and bereavement, and to spiritual literature.

Advocacy

Patients need help navigating through the system. Some forms of advocacy should be provided at a personal level, to help alleviate potential and encountered issues. A list of advocates, who know the system and who can pose the questions that need to be asked, would help.

Pain and Symptom Management

Appropriate pain and symptom management is needed to maintain a patient's physical comfort. Patients need to know how to communicate symptoms to their caregivers, and that it is possible to manage pain. Patients need to be provided with education (in legible and understandable form) regarding medication for pain relief and with education regarding pain control. They need information on pain management myths (e.g., taking pain medication will inevitably lead to drug addiction), and advice regarding bowel needs and routines.

Information on Community Services/Resources

Patients and families are often searching for information on the palliative care community resources and support services available in their local and regional area. This search for information includes establishing what expectations patients and families have of these programs, and what expectations these programs have of the patient and the family as members of the health care team.

It would help if information would be compiled in a community resource guide that would list:

• location of palliative care beds in the community, including hospitals and hospices
• home care nursing services, respite centres, meal providers, pharmacies that carry special medications (including pharmacies that are open after-hours), hair care
• information on how to access available services
• contacts, names of primary and palliative care coordinators, including emergency telephone numbers
• best travel means (transportation/affordable transportation) and accommodation sites/arrangements in proximity of a community resource
• potential support networks, including counseling services, support groups, and places of worship
• speakers' bureaus

Such information must be relevant, at the local and regional levels, to the people using it. It is essential to ensure that the resources listed are in fact available and have the capacity to take on more patients.

Quality of Life

Patients want to maintain independence and control over their lives, and participate in decisions concerning their care.

Information on and application of alternate therapies, including massage therapy, aromatherapy, and relaxation therapy can help enhance quality of life.

2.2.2 What Caregivers Told Us in Person about Their Needs

We asked professional and non-professional caregivers to tell us what they consider to be their top needs in dealing with their patients' terminal illnesses. They conveyed to us the following information.

Time and Adequate Resources

One expressed need was finding sufficient time with patients and families to provide appropriate care, including adequate time to present and discuss helpful topics such as relaxation techniques, dietary and nutrition information, and finding the right words to say.

Another expressed need was having adequate resources (funding, professional care givers, beds, computer equipment, information exchange systems, and material) to do the job.

Access to Research Information

Professional and non-professional caregivers expressed a need for a summary of research that has been done, with easy and quick access (from the office and from the patient's home) to latest quality, cutting-edge, evidence-based research. The summary should provide information on interpretive aspects of research, by taking major subsets and summarizing a brief on what exists and what is important. In other words, the research information should be summarized, but not interpreted for others.

This kind of summary information (specialization-specific or general, such as how to get started, what steps to take, seeing it through) should also allow for the establishment of easy links to those doing the research and for networking with them. Professional and non-professional caregivers need to be able to:

• Develop and convey research questions in areas of interest.
• Find increased access to funding for palliative care research (some suggested creating a list of granting agencies and foundations for palliative care research. The list would include locations of the granting agencies and information on what specifically they fund).
• Explore opportunities for research and partnerships.
• Obtain information on activities at the Canadian Institutes of Health Research (CIHR).

Research areas that would be deemed helpful are pain and symptom management, psycho-social research, case management, and wound care. Access to research information on complementary therapies (e.g., herbal medicines) would also be useful.

Continuing Education

Professional caregivers need ongoing education to support their practices. They see education for professionals as a means of increasing the knowledge base on palliative care (basic symptom and pain management, how to deal with and/or treat side effects). They would find it helpful to know what accredited, continuing medical education (CME) courses that deal with palliative care are available.

Professional and non-professional caregivers need a venue for discussing ethical dilemmas and the various situations that arise (because of differences in culture, ethnicity or religion).

In reference to the CVH, professional and non-professional caregivers see some benefit in having:

• the ability to place palliative care standards (e.g., nursing standards) and examinations online (e.g., for certification purposes)
• programs of educational meetings and workshops posted
• a specific reference area for procedures, including just "bare bones" procedures that are reasonably common in palliative care (e.g., line maintenance), and especially "rare" procedures (i.e., rare to those who do not practice palliative care full time)

Access to Patient Information

Professional and non-professional caregivers need to be able to meet with patients and their families as early as possible, in order to transmit information and orders to other care providers quickly, and they need to know that the orders are received. Not knowing about patients makes providing timely, adequate care that much more challenging. Caregivers need quick access to relevant patient information, including up-to-date information on other prescriptions a patient is receiving, and they need quick access to a patient's prescription information from the patient's home.

Personal Networking and Support

It is important for professional and non-professional caregivers to have opportunities for networking (for support and to communicate with others in palliative care). They appreciate the benefits that can be derived from interdisciplinary/collaborative care.

The CVH is seen as a key contribution to keeping professionals in palliative care linked. In reference to providing a "professional-to-professional" consulting capability on the CVH site, participants in our sessions indicated that online consultation will require a change of habits and practice patterns. As one does not necessarily know the person with whom one is conversing, a problem of trust may arise. "Credentialing" of the experts to whom one talks, and ascertaining their clinical knowledge base may be necessary. However, many of the persons we interviewed did not see this as very different from conducting a phone consultation. Despite that, they did emphasize that the professional-to-professional network should not be restricted to physicians only; rather, it should be interdisciplinary in focus. Any professional caregiver should have the ability to "consult" with any other professional caregiver. Physicians may want to talk to social workers, nurses, pharmacists, and so on. The key would be to trust the person with whom one speaks, and to take into account regional and practice area differences. The professional-to-professional network should foster a mentoring-style program.

A downside to professional-to-professional support may be that assumptions could be made about the circumstances in which a professional is calling for support. These circumstances can be different from those of the professional(s) providing the advice.

Self-Care

A high-priority need is the difficult-to-attain need to achieve a "balanced life;" the ability to finish the workday at 6 P.M. and have acknowledgement from others for the effort applied. One also needs to have rest periods, free personal time to care for oneself, and a private space to reflect and feel. Self-care includes the acceptance of personal and professional limitations, i.e., the ability to set boundaries and find avenues to debrief.

Peer and Team Support, and Respect

Identified as important needs of professional and non-professional caregivers are good team support, emotional peer support, spiritual support, the ability to vent, to be valued, supported, and respected for the role the caregivers perform. Good peer and team support includes a coordinated program of care communication with other caregivers, continuity of communication, and sharing of reports (to avoid too much care "fragmentation"). Trust and confidence in other team members are also needed.

Access to Information

Community resources information is needed by the caregivers in areas such as:

• support groups, community services, pastoral care, grief and other counseling, and language translation services
• available resources for clients who live longer than expected
• help for renovating bathrooms for changing needs or disabilities

2.2.3 What Caregivers Told Us through Surveys

Online surveys of professional and non-professional caregivers caring for persons living with a terminal illness were also conducted. The following is a summary of findings from the 491 respondents to the survey:

• This group was most supportive of having end-of-life care issues, as well as spiritual and emotional support needs discussed in chat rooms.
• Respondents were fairly evenly split in terms of whether there were topics that would not be appropriate for discussion in a chat room. There was no clear consensus as to the type of chat room that should be set up.
• A strong majority of respondents indicated that professional and non-professional caregivers should be allowed to participate in chat rooms, along with patients and families/friends.
• Half of the respondents felt that access to chat rooms should be restricted in some way.
• Professionals and non-professionals indicated that they were currently accessing palliative care-related information through colleagues, and at conferences and seminars. (Professionals are currently networking and exchanging information; the CVH could build upon this network by providing an additional means of exchanging information).
• Although two-thirds of respondents indicated that they are getting information on palliative care from the Internet, only one-third indicated that there were Internet sites to which they would recommend the CVH link.
• A strong majority of respondents indicated they would use the educational network available on a CVH site. The most common requests (76%) by those who would use the educational network were for web site linkages. Professional development information, such as listings of conferences and palliative care programs, and access to scientific journals, were also popular.
• A third of respondents expressed concerns about the general public accessing the educational network; two-thirds thought members of the general public should have access. One in ten respondents indicated that access to the educational network should be restricted in some way.
• Support groups, home-making services, transportation services, medical equipment, meal preparation, and health care services were most strongly supported in terms of community-based palliative care resources information to be provided on the CVH site. A low priority was assigned to spiritual care services.
• Over half of the respondents indicated that they would use the professional-to-professional network. Most respondents felt that a time interval of up to 24 hours was acceptable, in terms of having a question answered by a palliative care expert.
• Respondents indicated that the types of information they would like to access on this site should include information about clinical practice guidelines as well as information on pain and symptom management and assessment. Stress management information for both patients and caregivers was also a popular request, along with a listing of palliative care experts affiliated with the site.
• Only 15% of respondents indicated that they would not be interested in participating in online conferences.
• About half of the respondents indicated that there should be a process in place to register and authenticate the identity of this network's professional care providers.
• There did not appear to be a strong consensus as to the types of research that should be conducted on the CVH site. In terms of categories of research information, respondents would most like to see information on recent Canadian publications, followed by information on possible collaborative studies.
• Only one in ten respondents felt that there should be restrictions of access to the research network.
• One in three respondents indicated that they would consider purchasing a product through the CVH site; however, the majority were unsure or did not answer this question. No strong concern was expressed about patients using the CVH site to purchase products.

2.2.4 Some Additional Thoughts from Professionals / Non-Professionals

Professional and non-professional caregivers provided us with the following additional insights and views on the proposed CVH web site.

The CVH will need to have a competent, well-paid secretariat in place. The secretariat will need to advocate for access to the Internet, especially in remote and rural areas. The secretariat will need to exercise some censorship; for example, over site content or activity deemed fallacious or fraudulent.

Care needs to be exercised to "balance" the amount of information provided. Too much information can lead to "information overload." The CVH is not seen as the place to keep patient information. The CVH should help focus/filter information for professionals. All information should be bilingual. The secretariat should not limit itself to Canadian publications when looking for French material.

The CVH should address all end-stage diseases, not just cancer. As there are different needs for different end-stage diseases, the CVH should not restrict its content to one particular disease. Information on the site must extend beyond the physician and treatment aspects of a terminal illness, and needs to be written at a level that most people can understand.

Many rural towns do not have persons with palliative care training, so the CVH could be very useful in rural and remote areas, where it is difficult to access specialists by telephone, and travel costs make education of professional and volunteer caregivers a significant challenge. Continuity of caregivers is a main problem in rural and remote areas. Many healthcare professionals saw the CVH as a means of helping rural residents remain in their home communities.

Differences in terminology used across regions need to be addressed. The word "hospice" causes misconceptions and problems in many regions of Canada. For example, in Newfoundland, the word "hospice" is apparently not familiar to the majority of the population. In Quebec, hospice is a pejorative word. In British Columbia, a focus group on palliative care indicated that the word "hospice" is a "barrier to many people in accessing services." All three regions suggested that the term "palliative care" would be more appropriate and recognizable.

Province-to-province differences in health care systems (e.g., differences in drug plans) could make inter-provincial chat room discussions among parties frustrating and difficult to relate to.

A pediatric component as well as an adult component will be needed on the site. The pediatric component should deal with the child as "family member" and the child as "patient." The site could incorporate a monitored Children's Chat Line. The site could provide answers to the questions children may ask, it could help parents see the kinds of questions the children may be asking, and it could answer parents' questions about children (e.g., Should they attend the funeral? Should they visit in the hospital?).

Although some advocated for a completely open research web content, others felt that there is a responsibility to be protective of patients and families, and that accessibility to research information may overload them. A disclaimer would be needed so that it would not appear the CVH is endorsing/promoting research findings.

The site will need to differentiate between national and regional components. In developing the site, priority should be given first to linkages of national importance, relevance, and coverage. The site will need to adhere to all provincial and federal privacy laws.

Concern was expressed about the challenge the CVH will face in maintaining the community services/support information on the site realistically up to date. As information about resources changes with some frequency, some professional and non-professional caregivers have suggested that rather than list contact names and numbers, to consider instead indicating the types of resources (and suggested headings) that can be sought by looking in the Yellow Pages. Others suggested that the CVH secretariat consider providing local palliative care programs with templates that they could use for developing their own web sites of information, with a link to the CVH. The site should not be "caring" for people; instead, its primary function should be to re-direct inquiries back into the community.

Spiritual support, i.e., dealing with meaning-of-life issues, for example, is most often neglected. Perhaps a special "spirituality room" that would provide some interactive music could be set up as part of the CVH, in such a manner that the user would not necessarily have to interact with other people.

An "administrative corner" or section for the development of standard forms was proposed. It would be helpful to have sample forms (e.g., sample palliative assessment forms) and procedures on the site.

It would be useful to be able to download relevant information from the CVH site to a Personal Digital Assistant.

Concern was expressed about liability issues.

Generally speaking, links should be provided to caregiver guides, to the CHAMPS program in Ontario, to other discussion and professional groups, and to other organizations, such as the Canadian Cancer Society and the Heart and Stroke Foundation. The site should host an index, with appropriate links, to studies of the National Cancer Institute.

Users may prefer to remain anonymous or be identified in their transactions on the CVH. There will be a need for user authentication.

Professional and non-professional caregivers echoed patients and families when they told us that building the CVH should not be attempted all at once. They suggested that the development of the CVH should be carried out in stages, allowing for time to evaluate, understand, and adjust at the end of a reasonable evaluation time period. Concern was expressed about the project proceeding too quickly or too slowly. Some suggested that an initial, pilot site be set up, where the CVH's vision and mission, the proposed networks, and an e-mail address for comments and suggestions would be described. Many stated that the CVH should "not re-invent the wheel," and that development efforts should not cause money to be spent unnecessarily (in the wrong areas). It was felt that developing the CVH will require the involvement of persons who are on the cutting-edge of health informatics.

An evaluation system should be built into the site. National standards exist for collecting data that evaluate how users judge the quality, validity, and readability (i.e., understandability) of the information they find on the site (and what makes it so), and how they use that information to make decisions. The evaluation should identify:

• how users found out about the site
• what parts of the site they find most useful/least useful
• what challenges they have encountered in using the site
• how they would rate the site in relation to other media (i.e., radio, television, newspapers, pamphlets, etc.) for obtaining the information they need
• how they are using the information to interact with other members of their particular care team
• how satisfied they are with the level of information available on the site
• the number of visits to the site and the number of visits by individuals

The site should also periodically administer surveys to assess users' levels of satisfaction with the CVH in terms of use, usefulness, and ability to secure needed information on community resources. The site's secretariat should be prepared to handle and respond to "angry e-mails."

2.3 What Would Help Differentiate the Site?

Many of the stakeholders with whom we spoke emphasized the need for this site to be different from other sites, to provide something unique. Many felt that the site should offer:

• Facilitated usage. Once the site is launched people should be shown how to use it. An online tutorial tool could be available (on the site) to show users how to use the site, i.e., how the site is to be used. This tutorial could use a problem-based approach as well as voice and animation to guide people through the site.
• Credibility. Because too many sites already exist on the web and many of the information sources on those sites are unknown, the CVH must be explicit about its critical review process, to ensure validity of the information. The CVH organization should even have an editorial board.⁸
• Accountability. Someone in the CVH organization (secretariat) should be designated as accountable for the CVH.
• Proper monitoring. Users want to know that the site, and the chat rooms in particular, are being properly monitored. A suggestion was made to incorporate the ability for a chat room user to "signal" for a monitor's intervention, if this user felt that a chat room participant was beginning to harass others.
• A mechanism for receiving feedback, suggestions, and input from users. Valuable information received by the CVH from its users should be analyzed and disseminated to help the wider audience.

3. Literature Review Highlights

In considering how consumers' use of Web-based health information may influence the design of the CVH, we devoted some attention to reviewing what the literature, produced by experts in the field of health care informatics, had to say about web applications that disseminate health information. This section summarizes our findings (recognizing that our findings are based on a very small representative sample from the myriad of research papers and articles published on this subject).

3.1 Health-Related Web-Based Applications Assigned Importance

In a November 2000 Pulse Survey, conducted for the College of Healthcare Information Management Executives⁹, over two-thirds of respondents considered the development of web-based health care applications as one of the five most important health related application development areas on which to focus. The other four were security/privacy (many were concerned about breach of security/privacy), clinical data repository, computerized patient record (CPR), and clinical information systems.

In a paper entitled "The Age Wave Meets the Technology Wave: Broadband and Older Americans," Richard P. Adler¹⁰ speaks of the value of broadband applications (e.g., the Internet) and of the special importance that broadband applications will have for seniors. He believes such networks bring benefits to older adults, including benefits such as:

• enhanced communications with family and friends
• expansion of opportunities for learning
• improvement in delivery of health care services
• support for independent living (...[by] automatically providing needed services, and allowing seniors to call for help when they needed it)

A summary entitled "A Wide Gray Gap"¹¹ (PEW Internet Project) reported that 53% of seniors who go online have searched for health and medical information. Wired seniors are as engaged as the general Internet population in searching the Web for medical advice and health information. Thirty percent of wired seniors say that the Internet has improved the way they get information about health care.

Between July 1998 and January 2000, physicians, nurses, and patients affiliated with the Hamilton Regional Cancer Centre in Hamilton, Ontario were randomly surveyed to determine their levels of Internet access.¹² All physicians, seven out of ten nurses, and about half of the patients reported accessing the Internet. Of the patients who did not have access to the Internet and did not plan to use it in the future, about half expressed no interest in using it, one in three said it is too expensive, and one in five said they would not know where to start. One in six patients said they had not heard of the Internet or the World Wide Web.

3.2 Web-Based Health Information Receives Mixed Reviews

In a November 2000 article entitled "Web Helping Patients Make Medical Decisions," Michael Pastore¹³ references a report from the Pew Internet & American Life Project, which:

• Indicates that half of the people who have used the Internet to get health and medical information say the information has influenced their decisions about treatment and care, and has improved the way they take care of themselves.
• References the report "The Online Healthcare Revolution: How the Web Helps Americans Take Better Care of Themselves," whose author(s) found that over fifty million American adults have sought health and medical information on the Web. A majority of the adults go online at least once a month to get health information.
• States that a majority of users are worried that Internet companies will collect and share data about the Web sites they visited, and they fear that insurance companies might change their coverage after finding out what online information they accessed; also, that their employers might learn what kind of medical material they accessed.
• Reported that search strategies of online health information seekers are "scattershot." Most report that the last time they were looking for health information online they found what they needed. But, they also relied on Internet searches without the benefit of professional advice, and often got information from Web sites they had not heard of before.
• Women are much more likely than men to use the Internet to get health and medical information, and that the online behaviour of those in excellent health differs from those who are in less-than-excellent health.
• In which, when asked about their most recent search for health information, 54 % of health information seekers said they were looking on behalf of someone else, and 43 % said they were looking for themselves.

Gunther Eysenbach and Alejandro R. Jadad¹⁴ have conducted a wide review of the body of research on evidence-based consumer health informatics in the Internet Age, which resulted in the following key observations:

• Consumers' direct access to vast amounts of health information (now available through the Internet) is bypassing the traditional relevant information "filtering" and "consolidation" which would normally have been provided by the professional caregiver. As a result, many professionals are concerned that consumers may misinterpret information and will not arrive at the information that is relevant to them, and that they will get lost in a lot of irrelevant and low-quality information.
• While most professionals lack sufficient time to familiarize themselves with information on the Internet, consumers have a lot more time to search the Internet for relevant information. This new "reversed" information asymmetry creates new conflicts; the fact that consumers are taking the initiative to look out for the latest research results "stands on its head the tradition in which a doctor gives orders and the consumer obeys."
• Much of the consumer education material that has been produced is at a higher reading level than the estimated average reading level of the general public, and most patient information on the World Wide Web is written at even higher reading levels. Such material may fail to communicate the intended basic information. Consumers often experience confusion and anxiety, caused by the virtually unlimited amount of information available, which is generally poorly organized and has quite variable quality and relevance.
• Consumers with an inadequate level of health literacy could have their understanding of health information impaired and could misinterpret the information that is being provided. This could cause them further problems and adverse outcomes, and could complicate their professional caregivers' abilities to provide appropriate care.
• Vulnerable people may also be victimized by biased or incomplete information from those with a financial interest in the information they provide.

In an article by Tyler Chin, entitled "Five questions for your future: What will be the e-impact?,"¹⁵ the author offers some questions that physicians need to ask themselves about what kind of new computer technology will best serve their practices. In this article, the author raises some observations about health information on the Internet. He cites that:

• With ready access to medical information on the Internet, patients can and do second-guess treatment decisions.
• Physicians will not use (the Internet) until they see professional and economic value in it ... until (they) believe the Internet is useful for their practices.
• Other emerging developments (in privacy and confidentiality matters) will require physicians to act to protect patient privacy and avoid malpractice lawsuits. These developments include electronic interactions between patients and doctors, patient and hospitals, hospitals and doctors, and doctors and insurers.

3.3 Criteria Established for Quality Web-Based Health Information

The quality of a health-related web site could have an effect on health outcomes. Several papers that highlight criteria for what contributes to the quality of health information provided on an Internet web site¹⁶ have been published. Generally, the themes or criteria for evaluating information on a web site are the extent to which the information provided on the site:

• Declares, up front, what the site is all about, what its purpose and objectives are, for whom the site is intended, and whether or not the site is trying to "sell something."
• Identifies the information's origin/source, and demonstrates that the information is current, relevant, and has been explicitly subjected to an editorial review process.
• Offers content that is accurate and complete, with appropriate disclaimers attached.
• Has links that are evaluated according to their relevance, currency, content, and ability to trace back (i.e., return) to the page from which the link was requested.
• Encompasses accessibility, intuitive navigability, and an internal search capability that allows users to easily locate information on the site.
• Includes feedback mechanisms and means for exchange of information among users.
• Has the author(s) and his/her credentials identified in articles. When making statements, the author should be referencing other sources or indicating that it is his/her opinion.
• Clearly identifies sponsors who are paying for the site, in part or in whole, explains their financial contribution, and certifies that they have no control over content.
• Presents evidence based and balanced information

In the Journal of Medical Internet Research, Gunther Eysenbach¹⁷ refers to the following ten "e's" in "e-health:"

• Efficiency of information, organized in such a manner that duplicate or unnecessary diagnostic or therapeutic interventions are avoided through enhanced communication between health care providers and patients.
• Enhanced quality of care, by directing patient streams to the best quality providers and community resources.
• Evidence based; interventions and information based on proven, rigorous, scientific evaluation.
• Empowerment, by making the knowledge bases of medicine accessible, over the Internet, to consumers.
• Encouragement of a new relationship between patient and health professional towards one of true partnership, in which decisions are made in a shared manner.
• Education, through online sources, of physicians (continuing medical education) and consumers (health education, tailored preventive information for consumers).
• Enabling standardized communication and information exchange between health care establishments.
• Extending the scope of health care beyond its conventional boundaries, in a geographical as well as a conceptual sense.
• Ethics, by involving new forms of patient-physician interaction, which poses new challenges and threats to ethical issues such as online professional practice, informed consent, privacy, and equity issues.
• Equity, by making health care more equitable.

4. Design Considerations

4.1 Networks and Their Functions

In the early days of developing the CVH concept (please see CVH Business Plan), it was thought that the CVH would offer six primary networks or interactive channels: 1) Mutual Support Network, 2) Educational Network, 3) Community Resource Network, 4) Professional-to-Professional Network, 5) Research Network, and 6) Product Resource Network.

The following summarizes the specific functions that are intended for each of these networks.

4.1.1 Primary Networks or Interactive Channels

The Mutual Support Network

The CVH web site would allow people affected by end-of-life issues to communicate with each other. This may be accomplished with "chat rooms" that would allow people to "talk" to each other through the Internet. The chat rooms would be monitored by a health care professional with expertise in palliative care. In addition, there could be an area of the site that one could visit to find information on a variety of topics and answers to frequently-asked questions.

The Educational Network

The CVH would offer a broad range of educational resources that would be free and open to the general public. The site is intended to serve as a collection of accurate information, credible palliative care web site linkages, written and audio-visual material, and real time lectures.

The Community Resource Network

The CVH would serve as a guide to other palliative care resources throughout Canada. People would be provided with detailed information on local community resources, palliative care physicians, hospice care facilities, palliative care support groups, and other relevant listings.

The Professional-to-Professional

The CVH Professional-to-Professional Network would post the National Standards of Palliative Care, along with various clinical practice guidelines. Canadian physicians registered with the CVH would have access to expert consultation directly from a palliative care physician affiliated with the Canadian Palliative Care Physicians Society.

The Research Network

The CVH Research Network would be a storehouse of written, audio, and video information related to palliative care issues. Its intended role is to serve the specific needs of multi-disciplinary health care providers, researchers, academics, and students who require updated, accurate, and relevant data on palliative care issues and treatments. The Research Network could also be a centre for collaborative workflow, where researchers could collectively manage all documents associated with active research projects and multi-centre trials.

The Product Resources Network

The CVH may provide an ability to purchase goods and services related to palliative care, such as books and videos, healthcare assistance products, legal and estate planning, pharmaceutical drugs, and funeral and memorial planning. Charitable donations may also be accepted for the site.

Below is a high-level schematic representation of the CVH web site, as it was originally conceived.

4.1.2 New Networks

Based on the significant input, throughout this needs assessment study, from patients, families and friends, and professional and non-professional caregivers, the proposed CVH now needs to be "fine-tuned" in order to incorporate their many thoughts and observations. As a result of the needs assessment, conducted with these representative stakeholders, the number of "networks" or "compartments" that make up the CVH should be "adjusted." They should likely be increased from six to nine, to incorporate the originally-envisaged networks and three new sections entitled Personal Space Network, Professional Continuing Education Network, and Administrative Corner.

Each of these new "networks" is described below in more detail.

The Personal Space Network

The Personal Space Network is needed to accommodate some "private space" for the patient, family or friend. In this "private space" the patients, family or friends could create and maintain a personal diary, record thoughts, vent, meditate, access music and other entertainment, play electronic games, access works of literature such as poetry, access and display works of art or create their own art.

This space would be accessible only to the individual, unless that individual would open access of their space to others, something s/he may ultimately want to do in order to share thoughts, feelings, art creations, etc., with those close to him/her.

The intent of this space is to be a direct opposite of the mutual support network. The latter is there to actively promote personal exchanges through chat room activity and other "interactive" functions. Its nature is "extroverted." The personal space network, on the other hand, is "introverted;" it is there to provide the user with an opportunity to interact with him/herself, away from the open forums offered by the mutual support network (although the user may eventually want to "open up" his/her private space to others).

The Professional Continuing Education Network

This section would contain continuing medical education information that is intended for professional caregivers only. It could include information on medical and nursing faculty courses, conferences, special workshops, and other similar events.

The Administrative Corner

This section would consist of best-practice standards, forms, policies, and procedures that professionals could "draw on" (download) to use as templates in their own sphere of professional practice. The intent would be to help share best-practice administrative information in caring for patients and their families, and avoid having to "re-invent the wheel," if possible.

The diagram below shows the new high-level, conceptual schematic representation for the CVH web site.

Discussions held with study participants, and information derived from stakeholder surveys suggested that priority needs were in the areas of mutual support and education/information. This was followed by access to information on community resources and research. The lowest priority was given to professional-to-professional consultations, procurement of goods through the site, and the ability to post "final thoughts." This implies that the development of the CVH should likely proceed in the following component order:¹⁸

1. mutual support
2. education/information
3. professional continuing education
4. community resources
5. research
6. professional-to-professional consultation
7. administrative "corner"
8. product resources
9. personal space

The next section describes some general design considerations, specific functionality, categories of information, and other design characteristics that would help meet the requirements identified in this needs assessment.

4.2 General Considerations in the Design of the CVH Web Site

The following are general considerations to be applied to the design of the CVH web site:

• Access to the site should be possible from anywhere, at anytime (24/7 availability).
• Displays and viewing of pages must be available in Canada's both official languages.
• The site should be designed so as to be highly intuitive and very easy to use.
• Easy navigation should be achieved with the help of:
  • A map of Canada, with its regions displayed, which users can electronically "point to" to hone in on information relevant to their locality.
  • The application of the "three-click" rule; that is, a user should be able to reach the material he/she is looking for in three "clicks" of the computer mouse, or less.
  • A site map, to help users navigate and make it easier for them to find the required information.
  • Same "look and feel" throughout the site. Also, tabs that appear across the top and bottom of a home page need to remain constant throughout all pages in the web site.
  • A 'built-in" search engine (capability) that would allow users to look for information by inquiring on keywords-in-context, phrases, and "sounds like" wording. The search engine should apply to all sections of the site.
  • A HELP function, to provide narrations for additional information/explanations, to guide the user through the web site.
  • A sample online tutorial, to simulate navigating through the site.
• Access to the site's sections should be "segmented." In other words, those pages that provide information intended for the general public should require no user identification or authentication. Web pages and interactions that will need to be controlled and/or monitored (e.g., patient/family chat rooms) would require some form of user registration and authentication.
• User authentication may follow a Public Key Infrastructure (PKI) protocol. Most importantly, the ultimate user authentication scheme used should leverage the work being undertaken by the federal government, to arrive at a national scheme for online user authentication, in order to avoid any design divergence from national directions or unnecessary duplication of work or effort, on the part of the CVH development team.
• Disclaimers will need to indicate that the CVH is not responsible for information found on information links.
• Designers of the site will need to consider that not all potential users will have access to high-speed Internet service, that some will be using the Netscape web browser in lieu of Microsoft Internet Explorer, and that a number of users will likely be using Apple models of personal computers.
• The design of the site should allow for a mid-tier level of user accessibility. In other words, it should be aimed at the most common versions of web browsers, connection speeds, and operating systems in use today, so as to be accessible (and legible) by the majority of the targeted audiences.
• Persons with disabilities (e.g., visual impairment) will need to be accommodated by following the World Wide Web Consortium's (W3C's) disability design standards. The federal government's own web site design standards will also need to apply.¹⁹
• A generous use of visuals. Sometimes it is difficult for a person with a terminal illness to search through a lot of words. At the same time, it is also important to be realistic about the use of visuals (i.e., not have just smiling, happy faces all the time).
• As part of the training and education material being presented, multimedia capabilities that would allow for the inclusion of sophisticated design and presentation concepts, such as insertion of audio and video clips, still photographs, cartoons, sound effects, and background music, should be incorporated.
• To the extent allowable, socio-demographic data should be collected about the CVH's users.
• The site's pages should be set up in a manner that would allow them to be easily tracked for access statistics. This implies that each page of the web site should be organized in meaningful "knowledge chunks."
• The site should incorporate a built-in evaluation system that would determine the categories of users accessing the site, the number of visits and repeat visits to the site, the segments or pages that are most often visited, the frequency and types of links executed, and the average duration of user sessions. The built-in evaluation system should also include intermittent, random, and selective polling of users to ascertain:
  • how users found out about the site
  • what parts of the site they find most useful/least useful
  • what challenges they have encountered in using the site
  • how they would rate the site in relation to other media (radio, television, newspapers, pamphlets, etc.,) for obtaining the information they need
  • how they are using the information to interact with other members of the care team with which they deal
  • how satisfied they are with the level of information available on the site
• The use of "drop down" lists should be avoided, where practical. If all available options are not displayed on a selection list in a single "showing," users may not know what options are available to them. Consequently, menus and lists should be displayed in full, to show the user all available options.
• It should be possible to print any of the pages on the web site in "printer-friendly" format.
• Recognizing a trend in computing towards wireless computing and transfer of information (and its eventual affordability and "market share"), display/processing capabilities of web pages should be designed with the ultimate aim to be accessible by personal digital assistants (PDAs).
• Templates and formats used in the site should be "reproduce-able," so that they could be used by local palliative care programs wishing to provide linked material and linkages to the CVH site.
• Appropriate space will need to be provided on the individual web site's pages so that sponsors' logos could be incorporated in an unobtrusive, non-overpowering fashion. This approach may also be necessary for banner ads and bulletin board displays.
• A user should be able to alter the content he/she once created (especially in areas such as personal space), if such content was created during a time when the person was stressed or upset.

4.3 Functionality

The web site should provide for the following functionality.

Accessibility

As certain sections of the proposed CVH web site would not be accessible to everyone, some restrictions will need to apply. The following accessibility parameters are proposed:

• The Mutual Support Network should be open to subscribers (based on subscriber type) with access to chat rooms.
• The Personal Space Network should be open to all subscribers to create a "personal space," which should then be accessible (with a password) only to the individual who created that space.
• The Educational Network should be open to all.
• The Professional Continuing Education Network should be restricted to professional caregivers.
• The Community Resources Network should be open to all.
• The Professional-to-Professional Network should be restricted to professional caregivers.
• The Research Network should be open to all.
• The Product Network should be open to all.

Individualizing/Personalizing Site Interactions

• The site should have the capability to allow a person to register online to become a CVH site user, and to provide the person (user) with his/her personal, unique user identification (ID) and password. During the registration process, the system should acquire information such as the person's first and last names, city/town, province, age (if they are willing to provide it), and disease being cared for (if they are willing to provide this information). This online registration process should extend to the registration, authentication, and "credentialing" of professional care providers who would also be users of the site.
• The system should be able to remember, in subsequent sessions, the above user-provided information, by associating the information with the user's assigned ID and password. This would eliminate the need to ask the user for the information again, and it could extend to having the site refer to the user, during online sessions, by name.
• The system should be "smart enough" to recognize, by means of incoming addresses, users who are not located in Canada or who provide inaccurate or false information (e.g., a non-existent town or city, a non-existent address within a town/city).
• The system should be able to allow users to record their daily thoughts, maintain a personal diary on events, experiences, feelings, symptoms, and food intake.
• The system should be able to provide a user with the option to create and maintain a "personal"/"private" room that would offer solace, poetry, inspirational readings, music, other forms of entertainment (e.g., comedy skits), and a place to vent.

Content Management

• The site should support easy-to-use web authoring and content-modification software to create, edit, preview, and display content.
• The introduction of "smart" software is needed for the site, to perform an ongoing check of the site's contents, in order to identify occurrences of information duplication and redundancy.
• Basic editing functions should include a spell-check capability and the ability to recognize correlations between key words. For example, if a user enters the name of a city but specifies the wrong province, the software logic for the web site should be "smart enough" to correct this automatically.
• The site should provide the ability for a third party to monitor chat room activity and to intervene, if necessary, and to suspend/disconnect chat room interaction, if that is required.
• The site must have the ability to package sets of information into "kits" that could be downloaded by a user.
• The site must be able to provide a caregiver with the option to create and maintain "to do" lists, lists of key contacts, goals of care (and last time re-assessed), and progression of care.

Housekeeping and Maintenance

• The site must have the ability to remove/delete user "accounts" when a person has passed on, or when a person specifically requests that his/her ID be deleted/removed from the site.

Communication

• The site must have e-mail/contact us capability so that users can provide comments, feedback, and ask questions.
• The site should allow users to compose and send e-mail to any party from any location on the CVH web site.
• The site must provide a link to "live-person" consultation, in order to deal with users' problems and questions. In other words, it must provide a link to an "on-call" physician or at least the telephone number of the person to call. There may be more than one "on-call" person; for example, if the site has to support "on-call" persons assigned by region of the country.
• The site must have the ability to record patients', families', and friends' "lessons learned," and to disseminate this information to others.
• A "pen pal" registry should be incorporated into the site, along with the ability to update that registry.

Linkages

• The site should allow links to other sites. These could be links to relevant medical and community resource sites, to electronic informational manuals, to referral guides, to listings of relevant literature, to a care-related information library, and to interesting, relevant articles.
• Restricted links should be provided to individual provincial drug prescription information systems from which information could be secured on medication prescriptions given to a patient.²⁰

General Information

• A section on frequently-asked-questions (FAQ) should be included in the site.
• The ability should be provided to download and print forms relevant to legal, financial, tax return, change-of-address, title change, and vital statistics application matters.
• Explanations or information on the differences between provincial health care coverage and palliative care coverage may need to be provided.
• A Glossary of Terms should be made part of the site.

4.4 Information Categories

Patients, families, friends, and professional and non-professional caregivers took part in discussions and surveys. The following categories of information are derived from the discussion and survey results and should be available on the site.

Information Exchange (Mutual Support)

The following categories were identified as individual categories of chat rooms in which to promote information exchanges:

• Family-to-Family
• Patient-to-Patient
• Patient-and-Family Mix
• Policy and Advocacy
• Children's Line
• Bereavement
• "Ask an Expert"
• Professional-to-Professional

Education

• Glossary of Terms
• Frequently-Asked-Questions (FAQ)
• The "Ideal" Curriculum for Professional Caregivers
• The "Ideal" Curriculum for Non-Professional Caregivers, including families and friends
• Recognizing Signs of Symptoms, Problems, and Complications, by Disease and Prognosis
• Questions to Ask a Professional Caregiver
• Treatment Options
• Pain Management Options
• Alternate Therapies
• How to Care for a Patient
• Care Plans
• Diet and Nutrition
• Dealing with Adverse Social Behaviour
• Counseling Children
• Medication Dosage, Timing, and Side Effects
• Self-Help for the Caregiver
• Coping with Changes
• Coping with Stress
• "Self-Help" Tips
• Visitor Etiquette
• Financial Planning
• Legal Planning
• Role of Public Guardians/Trustees
• On Death and Dying
• On Attending to Matters at Time of Death
• On Grieving and Bereavement
• Relevant Plays and Movies
• Conferences, Workshops, and Seminars for All the Above Categories
• Library Resources for All the Above Categories

Professional Continuing Education

• How to Deal with, and Treat, Side Effects
• Accredited Palliative Care CMEs
• Other Educational Meetings and Workshops
• Case Studies
• Care Procedures and Standards
• Examinations

Community Resources

• Home Care and Home Support
• Meal Preparation Services
• Palliative Care Physicians
• Palliative Care Coordinators
• Home Medical Services
• Emergency/Crisis Contacts
• Respite Centres
• 24-hour Pharmacies
• Pharmacies Carrying Special Medications
• Equipment Suppliers and Services
• Language Translation Services
• Support Groups
• Advocates
• Pastoral Care
• Online Grocery Shopping
• Other Online Shopping (e.g., for renovations, repairs)
• Temporary Care Services for Pets
• Transportation and Accommodation Services
• Applying for Handicapped Parking Passes
• Donations and Recycling
• Potential Companions and Pen Pals
• Counseling
• Financial Resources, including programs of:
  • Social Assistance
  • Charitable Benefits and Community Assistance
  • Income Security
• Legal Resources
• Hospices and Hospital Palliative Care Beds, and associated virtual tours
• Funeral Services
• Places of Worship
• Speakers' Bureaus

Research

Research topics should be organized by areas of interest, such as pain and symptom management, psycho-social, case management, wound care, and complementary therapies. Research topic categories are the following:

• Summaries and Abstracts
• Research Sites and Contacts
• Initiating and Executing a Research Program
• Foundations and Granting Agencies
• Funding Categories
• Collaborative Research Opportunities
• Index to Studies by the National Cancer Institute

Professional-to-Professional

• Roster of Affiliates and Credentials
• On-Duty/On-Call

Administrative Corner

• Palliative Assessment Forms
• Inter-Disciplinary Progress Notes Forms
• Survey Forms

Product

• Medical
• Assisted Living
• Cleaning

Personal Space

• Personal Diary
• Entertainment (including music, comedy, movies, drama, etc.)
• Art
• Poetry
• Other Literature

4.5 Policy and Legal Considerations

Some policy and legal considerations will have to be addressed in the development and management of the site. These considerations include:

• Provincial regulations and policies. Information will need to reflect relevant jurisdictional issues, to ensure users have accurate information for their respective province or territory.
• Establishing the credibility/quality control of the online "on-call" advisor. Obviously, this must be a licensed professional. The advice given must be assessed by the recipient and assumed to be reasonable before action is taken on it. Both the giver and the recipient of advice will have certain legal obligations.
• Establishing a quality control procedure for regular review of material that appears on the site, to ensure that such material is accurate, compliant with any changing provincial legislation or regulations, and uses proper syntax, grammar, etc.
• Authors and contributors who provide the content and advice for the site could have liability issues. The CVH secretariat will need to obtain adequate liability insurance.
• Terms of Use, Confidentiality, and Privacy policies will have to be included on the web site.
• Securing the CVH secretariat's rights to the web site design, content, and source code.
• Applying appropriate copyrights and trade marks to site material/content.

4.6 Audit Trail Provisions

In order to maintain records on activity on the site (for legal or other reporting purposes), sufficient online audit trail provisions would need to be built into the CVH site to track/monitor, on an ongoing basis, information such as:

• Who accessed the site?
• How long were they on the site?
• What activity (interaction) did they carry out on the site?
• What changes in content occurred on the site, and when were these changes applied?
• Which CVH secretariat staff and consultants were "on call," and during what time periods?

In addition to audit trail functions, appropriate backups, and backup and recovery procedures will need to be incorporated into the design and implementation of the site to help manage temporary or significant loss of the site and its contents.

4.7 Web Site "Seal of Approval"

To help reassure users that the CVH secretariat is administering close control of site content and activity, the secretariat should secure accreditation through a trust assurance service, and apply a "secured trust assurance" seal to the web site.

A number of firms specialize in assurance services for web sites, and use national assurance standards (frameworks) published by such organizations as the Canadian Institute of Chartered Accountants. The process usually involves engaging such a firm to conduct an independent review of internal controls and processes applied to the site. Such a review can incorporate an assessment of system reliability, availability, integrity, security, and adherence to privacy and confidentiality protocols.

4.8 Estimated Volumes

Potential users of the CVH site could include:

• Patients and their families. About 220,000 people die in Canada each year. The majority of these deaths occur as a result of terminal illness and natural causes. In addition to persons diagnosed with a terminal illness, one or two of their family members or friends could also access the site.
• Physicians, medical students, and postgraduate students in Canada (in total about 65,000; about 55,000 of those are physicians).
• Approximately 240,000 registered nurses in Canada.
• Psychiatrists, pharmacists, and other practitioners who make up the balance of the approximately 720,000 health care professionals in this country.
• One million Canadians employed in the social science, education, government, and religious services in Canada. Eighty percent of the social and community workers in this country work in the health sector.
• 6.5 million Canadians who volunteer their time in services to others. The number of Canadians who provide these care services in the health sector has not been ascertained for the purposes of this report.

These figures are presented in order to give designers of the CVH web site some indication as to the site's potential user population.

5. Next Step

The next major step in the development of the CVH site would be to produce the detailed specifications and design. This would include invoking the following activities:

• researching privacy legislation across Canada and developing "corporate" policies regarding privacy and confidentiality
• presenting the detailed specifications and design
• developing an initial high-level prototype (also to be used for presentations and promotional opportunities)
• identifying target technical partners for hardware, software, network/data communications, and an Internet service provider
• reviewing and confirming CVH roll-out staging
• developing the detailed specifications and design document
• developing and issuing a Request for Proposal for development of the site
• reviewing/updating/refining the CVH Business Plan, including financial projections
• selecting the firm for the site's development phase
• establishing a CVH secretariat to oversee the development of the site, and selecting and appointing a Board of Directors
• finalizing terms of reference for, and appointing, a volunteer Advisory Board
• developing detailed job descriptions for Nurse Practitioner and for Research and Evaluation Co-ordinator
• recruiting Nurse Practitioner (Specialist) and Research and Evaluation Co-ordinator
• developing administrative policies

6. Conclusion

Properly developed, the Canadian Virtual Hospice Web Site promises to be a valuable asset for Canadians living with a terminal illness and those caring for them. Patients and their families should benefit from this site directly, by accessing information and support, and indirectly, as the professionals caring for them would also access this interactive and informational care network. The CVH has the potential to facilitate a proactive approach to the organization, management, implementation, and evaluation of palliative care service delivery in Canada.

Through this needs assessment, stakeholders helped to reaffirm the need for such a site, and the need for the site to provide opportunities and a framework for the exchange of information, facilitation of efficient communication and collaboration, access to relevant and current education and research, and increased awareness of available community resources.

Priorities in the site's development seemed to be in the areas of mutual support (personal exchanges) and education. This was followed by access to information on community resources and research. The lowest priority was given to professional-to-professional consultations, procurement of goods through the site, and the ability to post "final thoughts."

It is essential that the design considerations outlined in this report be applied to the development of the site, in order to help ensure its relevance and attractiveness to potential users and provide reassurance of its integrity.

The next step should be the development of specifications and a detailed design for the site (i.e., comprehensive blueprint), accompanied by the necessary establishment of the CVH secretariat and its affiliated governance and advisory groups.

Appendices

Appendix A

Focus Groups, Interviews, and Teleconferences

Focus Groups

Toronto, May 14, 2002 --- Professional Caregivers, Mt. Sinai Hospital, Organized by The Tammy Latner Centre for Palliative Care; Contacts 1. S. Lawrence Librach MD and 2. Kate Castonguay, Administrative Assistant.

Vancouver, May 24, 2002 --- Patients and Families (Vancouver General Hospital) and Professional Caregivers (Park Plaza Conference Centre); Contacts 1. Romayne Gallagher, MD , 2. Micheal Downing, MD, and 3. Leah Walker.

Winkler and Morden, Manitoba, June 3, 2002 --- Professional Caregivers, Boundary Trails Health Centre; Contacts 1. Dr. Cornelius Woelk.

Halifax, June 11, 2002 --- Professional Caregivers and Families, Centennial Building at the Victoria General of the QEII Health Science, Organized by Kimberly Widger, RN, MD; Contacts 1. Kimberly Widger, Project Coordinator, and 2. Gerri Frager, MD.

Quebec City, June 13, 2002 --- Organized by Pierre Gagnon; Contacts 1. Pierre Gagnon and 2. Joanne Paquet, Co-Moderator/Facilitator.

Winnipeg, Manitoba June 28, 2002 --- Patients and Families, Organized by Manitoba Hospice (Deer Lodge Centre); Contacts 1. Margaret Clarke and 2. Gale Bergen, Administrative Assistant.

Key-informant Interviews

1. S. Lawrence Librach MD, CCFP, FCFP, Director, The Tammy Latner Centre for Palliative Care, Mt. Sinai Hospital; Director, Palliative Care, Sunnybrook & Women's College Health Science Centre; Professor Pain Control and Palliative Care, University of Toronto
2. Judy Simpson, Coordinator of Palliative and Supportive Care, Cancer Care Nova Scotia, Halifax. Nova Scotia
3. Dr. Francis Lau, Medical Informatics Specialist, University of Victoria
4. Dr. Neil McDonald, Palliative Care Researcher and Author, Royal Victoria Hospital, Montreal
5. Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association (CHPCA), Ottawa, Ontario.
6. Laurie Anne O'Brien

Teleconferences

June 21, 2002 --- Remote caregivers; Participants: Joe Barnes (Territorial Coordinator Health Programs, Nunavut), Judy Poole (Oncology Nurse, Newfoundland & Labrador), Dr. Bryan MacLeod (Family Physician and Medical Director of Telemedicine, Wilson Memorial General Hospital, Marathon, Ontario), Dr. Jose Pereira (University of Calgary)

Unable to join us in the teleconference:

Sharon Specht (Yukon Home Care Program, Whitehorse, Yukon)
Elizabeth Hill (Palliative Care Coordinator, Meadow Lake, Saskatchewan)
Steve Ashwell (General Practitioner, Dawson Creek, British Columbia)

Appendix B

Potential Future Interviewees and References

The following is a list of some potential interviewees for the specifications and design stage of the CVH project.

1. Ms. Deborah Gordon-El-Bihbety of the Canadian Public Health Association (CPHA). Deborah co-ordinates the CPHA's National Literacy and Health Project, and is highly qualified to speak to the information needs of Canadians with respect to literacy/digital divide issues. Deborah possesses knowledge of palliative care issues and has done volunteer hospice work.
2. Dr. Gerald Minuk, Director of Liver Diseases Unit, Health Sciences Centre, Winnipeg; developer of series of CD-ROMS containing advice on managing patients with a range of diseases
3. The Palliative Care Resource Network Inc. (New Brunswick)
4. Johanne Senneville, President of the Quebec Association of Oncology Nurses
5. Contact with health jurisdictions in Europe to discuss the online professional-to-professional consultation functions they have implemented as part of daily practice workflow (Dr. Francis Lau, Victoria, BC, may have contacts)
6. Contact with the National Aboriginal Health Organization (NAHO) and the Canadian Aboriginal Nursing Association
7. Children's Wish Foundation
8. Association of Death Education Counsellors (ADEC)

Further references to consider during development of site include:

1. Curriculum and content of educational topics in palliative care, compiled as part of a needs assessment for an "Integrated Palliative Care Program in Nova Scotia and Prince Edward Island," March 2001, Judy Simpson, Educational Consultant.
2. Articles dealing with medical-based web design, for example:
   • Journal of Medical Internet Research (online)
   • Methods of Informatics in Medicine (European)
   • Journal of Medical Informatics Association
   • International Journal of Medical Informatics
   • Proceedings of AMIA
   • Medical Informatics (European proceedings)
   • Journal of Medical Informatics
   • Journal of Biomedical Computing
3. Charityvillage.com --- a non-profit, award-winning site dealing with some similar issues/content as the CVH (e.g., legal issues, advocacy, linkages, gentle, compassionate image).

Appendix C

Bibliography

1. Information Needs of Volunteer, Palliative Caregivers; Kim Chapman RN, MSc(n), Peggie Currie, RN, Louse Kemp, RN, MN, Chris deJong, RN, Linda Williams. A Collaborative Project Between Region 3 Hospital Corporation and the Palliative Crae Resource Network (New Brunswick); February 1, 2002
2. Improving the Front End of the Palliative System in Canada, a personal brief prepared by Gary Fish, family member.
3. Summaries of Focus Groups held by the Delta Hospice Society with patients, families, and caregivers in April and May 2001.

Appendix D

Canadian Virtual Hospice Network Executive Committee

Harvey Max Chochinov MD, PhD, FRCPC
Professor, Dept. of Psychiatry and Family Medicine
Division of Palliative Care
University of Manitoba
Head, Department of Psychosocial Oncology
CancerCare Manitoba

G. Michael Downing, MD
Medical Director, Victoria Hospice Society
Clinical Assistant Professor, UBC
Faculty of Medicine, Dept. of Family Practice
Division of Palliative Care
Palliative Medicine Consultant, BC Cancer Agency

Serge Dumont Ph.D., Professeur
École de service social
Pavillon Charles De-Koninck
Université Laval de Québec

Konrad Fassbender PhD
Senior Research Associate, Division of Palliative Medicine
Alberta Cancer Board Palliative Care Research Initiative
Grey Nuns Community Hospital
Edmonton, Alberta

Gerri Frager RN, MD, FRCPC
Medical Director Paediatric Palliative Care Service, IWK Health Centre
Assistant Professor, Dalhousie University
Halifax, Nova Scotia
Faculty Scholar Alumnus, OSI's Project Death in America

Pierre R. Gagnon, MD, FRCPC
Psychiatre specialise en psycho-oncologie
Professeur adjoint
Maison Michel Sarrazin et L'Hotel-Dieu de Quebec (Centre hospitalier)
Universitaire de Quebec
Quebec (Quebec)

Romayne Gallagher MD, CCFP
Director, Division of Palliative Care
University of British Columbia
Clinical Assistant Professor, Department of Family Practice, UBC

Mike Harlos MD, C.C.F.P.
Medical Director, Palliative Care Sub Program
Winnipeg Regional Health Authority
Medical Director, St. Boniface Hospital Palliative Care
Section Head, Palliative Care, Dept. of Family Medicine
Associate Professor, University of Manitoba Faculty of Medicine

Alejandro (Alex) R. Jadad, MD, DPhil, FRCPC
Rose Family Chair in Supportive Care
Canada Research Chair in eHealth Innovation
Director, Centre for Global eHealth Innovation
Professor, Depts. of Health Policy, Management and Evaluation, and Anaesthesia
University Health Network and University of Toronto

S.L. Librach, MD, C.C.F.P. F.C.F.P.
President, Canadian Society of Palliative Care Physicians
President, Ontario Palliative Care Association
Director, The Temmy Latner Center for Palliative Care
Professor, Dept. of Family and Community Medicine, University of Toronto

W. Gifford-Jones
Professor, Pain Control and Palliative Care, University of Toronto

Jay Lynch, RN, BAdm, MEd, Project Coordinator
E-Health Co-ordinator
SCO Health Service
43 Bruyere Street
Ottawa, ON

Jose Luis Pereira, MBChB, DA, CCFP
Medical Director, Tertiary Palliative Care Unit
Calgary Medical Region
Foothills Medical Centre
Calgary, Alberta

Patty A. McQuinn, RN, B.Sc., M.Sc.N (Applied)
Palliative Clinical Nurse Specialist
South-East Regional Health Authority
Moncton, New Brunswick

Anita Stern, BScN, MSc/PhD (cand), CHPN
Associate Investigator, System-linked Research Unit
McMaster University
Hamilton, Ontario

Robin Weir, RN, PhD
Investigator, Community Linked Evaluation Aids Research Unit (C.L.E.A.R.)
Associate Investigator, System-Linked Research Unit
Professor, School of Nursing, McMaster University
Hamilton, Ontario