Information and Informed Choice in the Use of Complementary and Alternative Health Care and Natural Health Products: An Invitational Roundtable (October 21-22, 2001, Vancouver)

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Table of Contents

• Executive Summary
• Introduction
  • Objectives
  • Process
• General Themes
  • Working interactively with many systems
  • Recognizing the role of complementary and alternative therapies
  • Approaching therapies in a holistic way
  • Developing standards and coordinating systems
  • Helping people to find and understand information
  • Improving skills in evaluating and applying information
  • Meeting people where they are
  • Respecting diversity and choice
• Sources and Systems of Expert Information
  • Challenges
  • Ways forward
    • Generating information and knowledge
    • Mutual recognition
• Collecting, Evaluating, Selecting and Presenting Accessible Information for Practitioners and Consumers
  • Challenges
    • Collecting information
    • Evaluating information
    • Selecting information
    • Presenting information
  • Ways forward
    • Basic requirements
    • Essential tools
• Public and Professional Education in Receiving and Using Information
  • Challenges in public education
  • Ways forward in public education
  • Challenges in professional education
  • Ways forward in professional education
• Improving Connections, Consistency, and Integration in Providing Information
  • Challenges
  • Ways forward
    • Building blocks
    • Short-term strategies
• Appendix A: List of Participants
• Appendix B: Agenda
• Appendix C: Participants' Replies to Questionnaire about Five Top Challenges

Executive Summary

On October 21-22, 2001, Health Canada convened an invitational roundtable on information and informed choice in the use of complementary and alternative health care (CAHC) and natural health products (NHPs). The meeting was one of several convened in 2001 and 2002 by the Health Human Resource Strategies Division, Health Care Strategies and Policy Directorate, Health Policy and Communications Branch, and the Natural Health Products Directorate, Health Products and Food Branch, on issues related to CAHC and NHPs.

The participants in the roundtable included conventional practitioners, complementary and alternative practitioners, information providers, manufacturers and providers of NHPs, academics, researchers and policy analysts. To include an international perspective, participants were invited from the United Kingdom and the United States in addition to Canada.

The objectives of the roundtable were:

• to provide a multisectoral forum for discussion
• to identify key challenges with regard to providing information and supporting informed choice in the use of CAHC and NHPs
• to suggest ways to address these challenges
• to produce a report on the roundtable for public distribution

The roundtable focused on four broad areas of concern:

1. sources and systems of expert information
2. the collection, evaluation, selection and presentation of accessible information for practitioners and consumers
3. public and professional education in receiving and using information
4. improving connections, consistency, and integration in providing information

Several general themes emerged from the discussion:

• Working interactively with many systems. Many systems are involved in providing information and supporting informed choice: research development, professional education, manufacturing standards, regulatory systems, health intermediaries and consumers' groups. Changes often occur when several of these systems interact (often through personal contacts and in local settings) so as to make established systems more responsive to complementary and alternative therapies.
• Recognizing the role of complementary and alternative therapies. The health system - conventional practitioners, professional associations, regulatory authorities, health departments and agencies - is an important source of information about health and health care for Canadians. It is essential that people who work in the health system (especially nurses, pharmacists and primary care physicians) gain a better understanding of complementary and alternative therapies, so that they can provide information about these therapies and support informed choice in their use. What is needed is greater recognition of the role that complementary and alternative therapies can and do play in health promotion and health care, and more effort to create a place for complementary and alternative approaches, practices or products within or alongside the health system.
• Approaching therapies in a holistic way. When gathering information about complementary and alternative therapies or providing information about them, it is essential to approach the therapies and their use in a holistic way. There is a danger of reducing complementary and alternative approaches simply to a specific practice or of reducing a practice simply to a single intervention.
• Developing standards and coordinating systems. It would be helpful if government agencies, professional associations and information providers in Canada could arrive at common standards for the evaluation, selection and presentation of information about complementary and alternative therapies, and could coordinate their work in promoting and implementing such standards.
• Helping people find and understand information. There are tools that would make it easier for people to find and understand the information they are seeking. They include such things as resources in multiple languages and in plain language, a bilingual (English and French) thesaurus of terminology of complementary and alternative therapies, a directory of complementary and alternative practitioners, and an inventory of agencies and resources that provide information about complementary and alternative therapies.
• Improving skills in evaluating and applying information. It is impossible to control the quantity and quality of information available to the public and practitioners. Nevertheless, steps can be taken to help the public and practitioners improve their skills in evaluating and applying information. This could involve such aids as checklists on what to look for in an information item, guidelines on when to seek professional advice or when to refer, or listings of recommended sources of information.
• Meeting people where they are. Communication and learning take place when information providers meet people where they are. It is important to remain abreast of current trends among consumers of complementary and alternative therapies, and to recognize the diverse interests and needs among consumers. More understanding is required of how people make decisions, and how to work with the informal networks upon which people rely for information. It is essential to provide access to sources of information in the communities where people live (e.g., primary care providers, community clinics, libraries); in a variety of formats (e.g., audio, electronic, print); and in the person's own language and at the person's functional level of literacy.
• Respecting diversity and choice. Diversity is an overall theme: complementary and alternative therapies are diverse, consumers of these therapies are diverse, and so are the reasons that people use them. It is important that initiatives and systems to gather and provide information about complementary and alternative therapies are capable of representing this diversity, and that they do not present a limited view of a given therapy by focusing only on a specific aspect (e.g., its usefulness in treating a certain condition).

This report provides a detailed summary of the participants' discussion of the four broad areas of concern, describing the challenges that participants identified and the ways forward that they suggested.

A Note on Terminology

During the roundtable, participants at times addressed their remarks generally and inclusively to all aspects of complementary and alternative health, including an overall approach to health, the practices employed in that approach, and the products employed in that approach. In this report, the phrase complementary and alternative therapies is used to refer to all of these aspects: overall approach, practices and products. The terms practices and products are used to refer to more specific aspects of complementary and alternative health, as required by the discussion.

Introduction

On October 21-22, 2001, Health Canada convened an invitational roundtable on information and informed choice in the use of complementary and alternative health care (CAHC) and natural health products (NHPs). The meeting was one of several convened in 2001 by the Health Human Resource Strategies Division, Health Care Strategies and Policy Directorate, Health Policy and Communications Branch, and the Natural Health Products Directorate, Health Products and Food Branch, on issues related to CAHC and NHPs.

The participants in the roundtable included conventional practitioners, complementary and alternative practitioners, information providers, manufacturers and providers of natural health products, academics, researchers and policy analysts. To include an international perspective, participants were invited from the United Kingdom and the United States in addition to Canada.

Objectives

• to provide a multisectoral forum for discussion
• to identify key challenges with regard to providing information and supporting informed choice in the use of CAHC and NHPs
• to suggest ways to address these challenges
• to produce a report on the roundtable for public distribution

Process

The agenda of the roundtable is provided in Appendix B.

Prior to the roundtable, participants were asked to identify five top challenges with regard to providing information and supporting informed choice. The responses were collated and made available to all participants (see Appendix C).

During the first session of the roundtable, participants described the perspective that they were bringing to the roundtable and the challenges that they identified from this perspective. In the remaining sessions of the roundtable, participants discussed four broad areas of concern in small groups (one area of concern per group, two groups running concurrently):

• sources and systems of expert information
• collecting, evaluating, selecting and presenting accessible information for practitioners and consumers
• public and professional education in receiving and using information
• improving connections, consistency and integration in providing information

Each group reported on its discussion to the roundtable in plenary, with opportunity for questions and comments from the roundtable as a whole.

This report summarizes the general themes that emerged from the discussion, and reproduces the substance of the discussion of each of the four broad areas of concern.

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A Note on Terminology

During the roundtable, participants at times addressed their remarks generally and inclusively to all aspects of complementary and alternative health, including an overall approach to health, the practices employed in that approach, and the products employed in that approach. In this report, the phrase complementary and alternative therapies is used to refer to all of these aspects: overall approach, practices and products. The terms practices and products are used to refer to more specific aspects of complementary and alternative health, as required by the discussion.

General Themes

Working interactively with many systems

Providing information and supporting informed choice involves working with interactive systems. When developing strategies to provide information and support informed choice, it is essential to address the interactions between the systems. All of the following factors were identified as key to providing information and supporting informed choice and, more importantly, were identified as influencing each other:

• improved professional relations among practitioners
• more education for conventional practitioners in complementary and alternative therapies
• more education for complementary and alternative practitioners in conventional medicine and research methods
• professional and regulatory development among complementary and alternative practitioners (e.g., defined scope of practice, practice standards, professional associations, qualifications, accredited schools, examining bodies, complaints procedures)
• improved systems of record-keeping, case-reporting, and tracking of outcomes for complementary and alternative therapies
• good manufacturing standards, consistency within and between product lines, and standard labeling
• research that is appropriate to the therapy under consideration, and that is capable of assessing the therapy within the context of its use
• awareness of consumers' goals, interests and needs with regard to health, healing and all modalities of care
• a better understanding of how consumers make decisions about their health and about health care

Recognizing the role of complementary and alternative therapies

The health system - conventional practitioners, professional associations, regulatory authorities, health departments and agencies - is an important source of information about health and health care for Canadians. It is essential that people who work in the health system (especially nurses, pharmacists and primary care physicians) gain a better understanding of complementary and alternative therapies, so that they can provide information about these therapies and support informed choice in their use. What is needed is greater recognition of the role that complementary and alternative therapies can and do play in health promotion and health care, and more effort to create a place for complementary and alternative approaches, practices or products within or alongside the health system.

Approaching therapies in a holistic way

When gathering information about complementary and alternative therapies or providing information about them, it is essential to approach the therapies and their use in a holistic way. Complementary and alternative therapies are often based on a comprehensive philosophy or understanding of health and healing. When the therapies are applied, the intervention can be dynamic and interactive, involving many dimensions of a person's life. There is a danger of reducing complementary and alternative approaches simply to a specific practice or of reducing a practice simply to a single intervention. It is important that conventional practitioners be aware of the overall approach of a complementary and alternative therapy, and understand the differences between a complementary and alternative approach and a conventional approach to the same circumstance. Similarly, it is important that research into complementary and alternative therapies use methods that are capable of investigating a practice or product within the context of its use.

Developing standards and coordinating systems

In the absence of standards that are widely accepted and used, the resources available to people who provide information or to people who use information are of variable quality. This places a considerable burden on providers of information, on practitioners and on consumers to assess the quality of information that they are getting about complementary and alternative therapies. It would be helpful if government agencies, professional associations and information providers in Canada could arrive at common standards for the evaluation, selection and presentation of information about complementary and alternative therapies, and could coordinate their work in promoting and implementing such standards.

Helping people find and understand information

There are tools that would make it easier for people to find and understand the information they are seeking. These tools would also make it easier for people providing information. They include such things as:

• resources in multiple languages and in plain language
• a bilingual (English and French) thesaurus of terminology of complementary and alternative therapies
• directories of complementary and alternative practitioners that could assist practitioners in making referrals and information providers in serving the public
• an inventory of agencies and resources that provide information about complementary and alternative therapies

Improving skills in evaluating and applying information

It is impossible to control the quantity and quality of information available to the public and practitioners. But steps can be taken to help the public and practitioners improve their skills in evaluating and applying information. This could involve such aids as checklists on what to look for in a piece of information, guidelines on when to seek professional advice or when to refer, or listings of recommended sources of information.

Meeting people where they are

Communication and learning take place when information providers meet people where they are. It is important, therefore, to remain abreast of current trends in the use of complementary and alternative therapies. It is necessary to recognize the diversity of people's interests, needs and wants with regard to complementary and alternative therapies. More understanding is required of how people make decisions, and how to work with the informal networks upon which people rely for information. It is essential to provide access to sources of information in the communities where people live (e.g., primary care providers, community clinics, libraries), and to provide information in the person's own language and at the person's functional level of literacy.

Respecting diversity and choice

Complementary and alternative therapies are diverse, the consumers of these therapies are diverse, and the reasons that people use them are diverse. This diversity complicates the ways in which research is conducted, information is communicated, health care practice is regulated and choices are made. It is important that initiatives and systems to gather and provide information about complementary and alternative therapies are capable of representing this diversity and that they do not present a limited view of a given therapy by focusing only on a specific aspect (e.g., its usefulness in treating a certain condition).

Sources and Systems of Expert Information

Information providers rely on various sources and systems of expert information. These include researchers, scientific publications, knowledgeable practitioners, professional associations, regulatory authorities, surveillance systems, information gathered from consumers and a variety of other sources, many of them informal.

Challenges

• Complementary and alternative therapies often involve an individual, interactive and holistic approach to health and to care. The therapies, therefore, need to be studied in relation to the many dimensions of a person's life and health. Research methodologies that aim to control contextual factors in order to study the effects of a single factor are not well suited for this type of inquiry.
• Research methods and research reports may be of poor quality. Sometimes this is the result of a lack of skill and expertise in those conducting or reporting the research. Sometimes it is the result of difficulties in translating perspectives, analyses and concepts that are foreign to Western scientific medicine. Sometimes it is the result of a lack of knowledge or understanding of the subject under study (as when natural health products are studied in concentrations that are below recommended therapeutic levels).
• Systematic reviews of research are, on the whole, more useful than single research studies. However, in the absence of manufacturing standards and batch-to-batch consistency for natural health products, it is difficult to conduct systematic reviews or draw general conclusions.
• Conventional practitioners (especially nurses, pharmacists, and primary care physicians) are an important source of expert information for consumers of health services and health products. However, at present, conventional practitioners are not in a good position to advise consumers about complementary and alternative therapies, for a number of reasons. Conventional practitioners may be adverse to or not knowledgeable about complementary and alternative therapies. Their professional regulatory bodies may prevent or discourage them from referring consumers to complementary and alternative practitioners. They may not know complementary and alternative practitioners to whom to refer consumers. They may not be able to find authoritative information and recommendations regarding complementary and alternative therapies.
• From the point of view of complementary and alternative practitioners, the way that information providers or conventional practitioners view a given complementary and alternative therapy can limit the value of the information they provide. They may focus on a specific practice or product without taking into account an overall approach to health and healing. They may view the therapy primarily as a means to treat an illness or condition, and may ignore the value of the therapy for health promotion or well-being.
• Consumers of natural health products are an important source of information on the effects of the products. However, post-marketing surveillance of the use of these products is weak. An effective surveillance system would require, for example, accurate note-taking by practitioners, reporting by consumers, standard recording forms and procedures, standard definitions of products and practices, and comparable health care interventions.
• Agencies to which Canadians generally turn for authoritative advice (e.g., government health departments, voluntary health associations) may not be in a position to provide recommendations regarding therapies (e.g., indications for use, recommended dosage). They may decline to do so because it is outside of their mandate, because of concerns about liability, because of the need for individualized attention to health care concerns or because of other reasons.
• Specific health institutions that have incorporated complementary and alternative therapies and/or guidelines for their use are sometimes reluctant to speak publicly about what they are doing. They may fear that it would bring the institution into scientific disrepute or would give rise to concerns about liability. As a result, information that could lead to wider acceptance of a therapy may not be routinely disseminated or widely promoted.
• Product labels are an important source of information for people using natural health products without consulting a practitioner. However, when products and their labels are not subject to regulatory control, they may be of poor quality (inadequate information, unsubstantiated claims, unclear language, etc.).
• Despite the current emphasis on evidence-based health care, it is far from clear that practitioners and consumers make decisions about health care on the basis of evidence. More attention needs to be devoted to understanding how practitioners and consumers make decisions, how they obtain and assess information, and how they assimilate new knowledge.

Ways forward

Generating information and knowledge

There are a number of potential sources of appropriate, reliable and valuable information about complementary and alternative therapies that are, at present, underutilized. Participants in the roundtable made a number of suggestions about these potential sources and how they might be developed:

• An infrastructure is required to build the capacity for research into complementary and alternative therapies in Canada. International participants at the roundtable observed that there was already a considerable amount of informal networking in Canada.
  
  A funded infrastructure could enhance this informal networking in numerous ways:
  
  
  • It could support the gathering, writing and dissemination of case reports.
  • It could conduct pilot studies as preparatory to a grant application to the Canadian Institutes of Health Research or other research granting agencies.
  • It could provide training and personnel awards to build the capacity of practitioners to conduct research and gather information.
  • It could support a mentoring program whereby recognized practitioners and researchers foster the development of the skills of novices in research.
  • It could be a vehicle for partnership with manufacturers of natural health products and government. (For instance, manufacturers, practitioners, and government could collaborate in establishing a post-marketing surveillance system for selected products.)
  • It could foster mutual recognition and collaborative ventures between conventional practitioners and complementary and alternative practitioners.
  • Above all - and this was stressed by participants - it could maintain a strong link between information gathering, clinical practice and community care.
    
    
• Case reports are a valuable source of information. Many 'best cases' are sitting on the shelf, waiting to be written up. However, practitioners require training, funding and release-time to write up and publish cases. With the support of an infrastructure for clinical training and research (see above), it should be possible to build practitioners' capacity to gather and publish case reports.
  
  
• There are institutions, regions and countries where complementary and alternative therapies have been accepted and practiced. A systematic review of information from these sources could be a stimulus for wider recognition and further research. Examples include a systematic review of the use of herbal medicine in Germany and a systematic review of the use of Reiki and visual therapy among pre-operative patients in hospitals in the United States.
  
  
• There are barriers to the dissemination of research in complementary and alternative therapies:
  
  
  • Conventional medical journals may have a bias against studies of complementary and alternative therapies.
  • Databases such as Medline provide incomplete coverage of journals specializing in complementary and alternative therapies.
  • Some journals that specialize in complementary and alternative therapies have been reluctant to publish abstracts in databases such as Medline.
  
  All such biases need to be overcome if there is to be wider dissemination of information about complementary and alternative therapies.
  
  
• Controlled pilot studies in institutional settings (e.g., hospitals, residential care facilities, community clinics) can lead to dialogue and collaboration between conventional and complementary and alternative practitioners. This can contribute to the recognition of complementary and alternative therapies. It can also contribute to the development of research methods that are appropriate to the therapy being studied. Existing integrated or combined practice centres that are recognized by both conventional practitioners and complementary and alternative practitioners have a role to play in promoting such pilot studies.
  
  
• Dual-trained practitioners (those trained in both conventional and complementary/ alternative systems) have a pivotal role to play in gathering information and communicating information. With their expertise in both systems, they have the capacity to understand what each system requires by way of approach, evidence and communication.
  
  
• There is increasing study and work among primary care physicians on the transfer and uptake of knowledge among practitioners and consumers. There may be opportunities here to learn from those working on these issues in primary health care or to collaborate with them in work that would be relevant to complementary and alternative health care.
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Participants in the roundtable noted that there continues to be unresolved issues related to research in complementary and alternative therapies. Several of these were noted in the discussion of challenges:

• establishing criteria for research that are appropriate to the therapy being studied
• developing research methods that register the multiple interactive dimensions of complementary and alternative health care
• avoiding the pitfalls of conducting research with an insufficient knowledge of complementary and alternative therapies
• designing research methods to study individualized therapies

In light of these challenges, it is not enough simply to insist on evidence. It is important to consider how evidence is gathered, what it is measuring, what it does or does not tell us, and how it should be applied in policy or practice.

Mutual recognition

Mutual recognition between conventional practitioners and complementary and alternative practitioners is a key step toward making the health care system a source of expert information about complementary and alternative therapies. Participants in the roundtable identified several factors that can help to bring about mutual recognition:

• when the complementary or alternative therapy as a whole is recognized (but not necessarily regulated) within the health system or within a particular health care setting
  
• when the therapy provides a solution to an issue (such as chronic pain) which the conventional system is unable to remedy
  
• existence of a defined scope of practice, practice standards, a professional association, accredited schools and examining boards for practitioners of the therapy
• existence of an authoritative reference or a body of evidence regarding the therapy
• when practitioners of the therapy are permitted to practice in a clinic or hospital in which conventional practitioners also practice
• when conventional practitioners are personally acquainted with or aware of the work of practitioners of the therapy, to whom they might refer consumers (this was identified as particularly important by participants in the roundtable)
• when conventional practitioners and complementary and alternative practitioners speak a common language and share common goals
• when complementary and alternative practitioners invite conventional practitioners, students and the public to observe their practice and learn about their perspective on the art and science of healing (this can make people open to changing their views)
• existence of contextual factors (such as government policy, insurance coverage or consumer activism) fosters the recognition and use of complementary and alternative therapies

However, participants in the roundtable cautioned that mutual recognition might not be the way forward in every instance. If mutual recognition means that complementary and alternative therapies are made to fit into the terms of conventional health care, it might be better for the public to work with both systems. The public often understands and values complementary and alternative therapies as a complement to conventional health care. How, then, can the co-evolution of both systems be fostered? This will involve formal and informal networks of trust, built on personal relationships, knowledge, data and beneficial health outcomes.

Collecting, Evaluating, Selecting and Presenting Accessible Information for Practitioners and Consumers

Challenges

Collecting information

The task of collecting information for dissemination to the public is complicated by the current status of sources and systems of information on complementary and alternative therapies. The challenges include:

• the variety of available sources of information, and considerable differences in the level of development and quality within these sources
• the poor quality of much information - on the Internet, in print, and communicated through informal networks
• variable quality of information for different kinds of complementary and alternative therapies (for some kinds of therapies, information is of better quality; for other kinds of therapies, it is of poorer quality)
• scattered sources of information (books, journals, websites, professional organizations, regulatory authorities, etc.)
• difficulty and cost of accessing books (often published by small presses) and journals (not widely subscribed to)
• incomplete coverage of complementary and alternative therapies in medical databases (e.g., Medline, Pubmed)
• lack of coordination among information databases, so that multiple and different searches are required
• lack of methods and tools to find information drawn from consumers' experiences, practitioners' experiences, regional or international sources, cultures with a strong oral tradition for passing on healing approaches, and other 'hard-to-reach' sources of information
• lack of standardization in the terminology, language and format of information on different kinds of complementary and alternative therapies
• problems with accessing information in foreign languages and with using information that has been translated from a foreign language, including loss of cultural context or limited understanding of cultural context
• difficulty in locating expert sources of information and in determining the basis of their expertise
• barriers to obtaining information about practitioners and the services they offer - incomplete and changing information; differences in professional regulation, standards, qualifications, accreditation; variations between regions or among countries
• potential for bias in information (e.g., information provided by manufacturers or by advocates of a particular therapy)
• the financial and human resources required to collect information (as well as to evaluate, select and present it) - there are charges for databases or publications; training and skill are required; the work takes a lot of time

Evaluating information

Since there is so much variation in the available sources of information, providers of information have to evaluate the information they receive or disseminate. This presents further challenges.

Participants noted that:

• the level of acceptance of a therapy can influence the presentation of information about that therapy as well as the evaluation of information about that therapy
• it is essential to determine whether information about a therapy is based on a holistic or contextual approach to the therapy
• there is no consensus on standards for assessing information and assuring the quality of the information (source of the information, content of the information, context for the use of the therapy, level of acceptance of the therapy, etc.)
• there are varying levels of skill in understanding and using health information among people who act as sources of information of complementary and alternative therapies, and this influences the quality of the information they produce
• there is a lack of the critical skills required to review and evaluate information: critical appraisal skills, knowledge of research methodology, statistical skills, knowledge of the therapy under study, etc.
• evaluation requires financial and human resources; there is a shortage of people skilled in evaluation and communication of information
• the evaluation must be communicated in plain language if the public is to understand it

Selecting information

When selecting information to present to practitioners or the public, providers of information face further challenges. These include:

• achieving a balanced perspective on the therapy: it is important to be inclusive of diverse points of view and different kinds of sources of information, while at the same time including only well-developed information and good quality information
• identifying any potential bias in the source of the information, in order to avoid unsubstantiated or biased claims: there is a need for independent sources of information that are relatively free of bias
• validating the information that has been selected
• maintaining the currency of the selected information
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Presenting information

Once information has been found, evaluated and selected, it must be disseminated and presented in ways that are accessible to practitioners and the public. The challenges here include:

• finding the right language - language that is faithful to the cultural context of the therapy; language that is true to the concepts of the therapy; language that is accessible to the audience
• reaching the desired population groups through communication strategies that are suited to those groups: audio communication, print materials, visual information, low-literacy publications, access to information in the community
• accessing popular channels of communication, such as television and newspapers, which communicate in plain language and are easy to understand
• presenting information that the audience will relate to, so that communication in fact takes place
• linking professional and public information, and ensuring that information provided to practitioners and information provided to the public are substantially the same (although the degree of technicality may differ)
• maintaining standards of accountability for information presented: balanced information, avoiding sensationalism or bias, noting pros and cons

Ways forward

Basic requirements

Participants in the roundtable identified a number of requirements that are basic to efforts to collect, evaluate, select and present information about complementary and alternative therapies:

• Financial and human resources. The work requires time, skilled staff, access to databases, access to expertise and access to multiple communication modalities.
• Quality assurance. It is important to have criteria and procedures that can be used to ensure that information has met certain standards (e.g., ISO 9000 standards, checklist of required features on an Internet site, expert review, etc.). These criteria and procedures should meet with widespread acceptance.
• Standardized databases. It would facilitate the gathering of information if databases were standardized, so that they accept similar search strategies and meet similar quality assurance standards.
• Varied and accessible formats. For information to be accessible and used, it has to be: in multiple languages (Canada's official languages, aboriginal languages, languages of immigrant populations); easy to understand (average literacy and low literacy); in various formats (audio, electronic, print, etc.); and available in the communities where people live.
• Coordination of diverse perspectives. Information on complementary and alternative therapies should respect the diversity of perspectives and philosophies inherent in these therapies, as well as the diversity of perspectives and needs of those who are seeking information about these therapies.
• A national network for information on complementary and alternative therapies could coordinate the development of tools, maintain a catalogue of resources, direct enquirers to the appropriate sources of information, provide information for integrated health care, etc.

Essential tools

Participants in the roundtable identified a number of essential tools that would facilitate the work of collecting, evaluating, selecting and presenting information to practitioners and the public. These include:

• a bilingual thesaurus (Canada's official languages) of terminology related to complementary and alternative health care and natural health products
• an up-to-date inventory of agencies or resources that provide information about complementary and alternative therapies
• a directory of practitioners, with information about how to find them and about their regulatory status, professional associations, scope of practice, qualifications, accredited schools, and complaints procedures
• a protocol that establishes criteria and procedures to ensure the quality of information collected and provided, and that identifies the skills required to implement these criteria and procedures

Participants observed that the development of one tool could have an impact on the development on subsequent tools. Therefore, there needs to be discussion about relationships between the tools, and about how decisions about the scope, content and evaluation of one tool can contribute to (or hamper) the development of other tools.

Public and Professional Education in Receiving and Using Information

Receiving and using information about complementary and alternative therapies is a challenge for both the public and practitioners. The present context makes it difficult for the public and practitioners to handle the quantity of information about, and the range of claims for, complementary and alternative therapies.

Challenges in public education

With regard to the public education, participants in the roundtable identified a number of challenges:

• identifying and meeting the needs of diverse audiences: the public at large, potential consumers of complementary and alternative therapies, specific populations (e.g., ethno-cultural communities, people living with a specific disease or condition, etc.)
• agreeing on a common message (is this possible or even desirable?)
• working with the mass media, which are a major source of information for the public, to disseminate information
• working with existing networks of information - informal (friends, family, etc.) as well as formal ones
• improving the potential of the practitioner-consumer relationship to become a two-way avenue of communicating and assessing information
• integrating information about complementary and alternative therapies into traditional sources of information about health and health care
• achieving a better balance in how different providers (such as health food store owners and pharmacists) approach and provide information on the same therapies
• helping people not to be overwhelmed by huge amounts of information and the accompanying sense of 'information overload'
• helping people to learn how to find information
• developing people's critical skills in evaluating information and applying information
• agreeing on who is or should be responsible for providing authoritative information
• accommodating the diversity of perspectives on complementary and alternative therapies

Ways forward in public education

• Public education strategies should be designed to meet the needs of specific audiences: the public at large, potential consumers of complementary and alternative therapies, and specific populations (e.g., ethno-cultural communities, people living with a specific disease or condition, etc.). A single strategy will not fit all audiences.
• Public education strategies should work with existing formal and informal networks of information. This could involve coordinating and supporting the work of these networks and building relationships between them.
• More needs to be done to develop the role of practitioners and professional associations in increasing public awareness of, knowledge of, and openness to complementary and alternative therapies. For example, when practitioners routinely ask about their patients' use of complementary and alternative therapies in an open and non-judgmental way, they create an environment where questions, discussion and evaluation are possible.
• It is essential to develop people's critical skills in finding, assessing and applying information to their needs. It is impossible to control the volume, sources and flow of information in our 'information age.' Hence, the critical skills that people bring to this information are indispensable. Such skills could be fostered, for example, by providing people with guidelines in assessing information, or with key questions to ask about a piece of information (such as the Canadian Health Network checklist at
   http://www.canadian-health-network.ca/html/help/checklist1.html).
• It is important to recognize that people make decisions on the basis of information that professionals do not consider authoritative or credible. More needs to be done to understand how people work with information and how they make decisions. Public education strategies need to work with these decision-making processes and the networks of information on which they rely.
• Information provided to consumers should convey a diversity of perspectives. It could, for example, offer three different perspectives on the same health concern. Such an approach acknowledges and respects the consumer's right to choose.
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Challenges in professional education

At many points during the roundtable, participants discussed how better relationships between conventional practitioners and complementary and alternative practitioners are integral to gathering, evaluating and disseminating information. Professional education has a key role to play in this regard. Some of the challenges faced in professional education include:

• dispelling erroneous perceptions of complementary and alternative therapies among conventional practitioners
• promoting discussion to broaden the perspective of conventional practitioners with regard to health, healing and disease
• bringing conventional practitioners to the recognition that complementary and alternative therapies can contribute a valuable dimension to health and healing
• improving the skill and literacy of conventional practitioners with regard to information about complementary and alternative therapies
• improving the skill and the literacy of complementary and alternative practitioners with regard to a basic core of knowledge about conventional medicine and research methods¹
• achieving a greater awareness on the part of all practitioners - conventional and complementary and alternative - of the limitations of all modalities of care and a greater awareness of when to refer to a more expert practitioner

Ways forward in professional education

• Education of conventional practitioners. Education and training about complementary and alternative therapies is needed for existing practitioners, newly trained practitioners, and students in training. It should be a component of undergraduate education, postgraduate education, and continuing education. A core component on complementary and alternative therapies should be required in undergraduate education.²
• Education of complementary and alternative practitioners. Complementary and alternative practitioners need education and training about conventional medicine (e.g., anatomy, biology, etc.) and research methodologies. There is also a need for a common curriculum on complementary and alternative therapies, since complementary and alternative practitioners are not necessarily well informed about all approaches and practices.
• All practitioners need to be trained in finding, evaluating and applying health information. They should be aware of guidelines being provided to the public about using information, and of questions to ask in using information. The messages for and from practitioners should be the same as those for the public.
• Interaction and collaboration between conventional practitioners and complementary and alternative practitioners in a clinical setting is conducive to learning and awareness on the part of both.
• Professional associations of conventional practitioners can facilitate greater acknowledgement of complementary and alternative therapies by fostering dialogue, supporting continuing education, and permitting or encouraging their members to collaborate with or refer to complementary and alternative practitioners, etc.
• As Health Canada establishes new regulations for natural health products and publishes generic monographs for products, it has an opportunity to educate practitioners (as well as the public). This could be the occasion for a collaborative educational campaign involving Health Canada, professional associations and educational faculties.

Improving Connections, Consistency and Integration in Providing Information

Challenges

One of the fundamental challenges in the area of information and informed choice is the complexity of the systems that are or could be involved. This was apparent as participants expressed different views on the possible role of a given system in providing information and supporting informed choice. For instance:

• An authoritative reference on complementary and alternative therapies (modeled, for example, on the Physicians' Desk Reference or the Compendium of Pharmaceutical Specialties) would appear to be a desirable and effective component in establishing a common body of knowledge and a wider recognition of these therapies. However, the diversity of schools of complementary and alternative therapies, and the lack of consensus on modalities of care make it difficult to develop such an authoritative reference. Moreover, the quality of information in existing authoritative references is problematic.
• Ultimately, the objective is to provide consumers with the information they need or want in order to make decisions about their health and health care. However, identifying what consumers need or want is complex. Consumers are diverse, and their needs and wants are diverse. Some may approach their health entirely from an alternative perspective, while others may only desire a discrete practice or product, without reference to a global approach to health. Furthermore, consumers' needs and wants are dynamic, influenced by informal networks, the media, increased knowledge, changes in the determinants of health, etc. Practitioners, health intermediaries and consumers' associations may be better attuned to consumers' needs and wants than government agencies, professional associations and educational faculties.
• Education for conventional practitioners in complementary and alternative therapies is key to establishing a common body of knowledge among practitioners and a greater openness toward different therapies. However, it is difficult to develop a common body of knowledge in the absence of authoritative references on complementary and alternative therapies. Moreover, it can be challenging for practitioners to keep up with the information that consumers are accessing and acting upon. A collaborative relationship between practitioner and consumer may be necessary to understand and explore the healing potential of the therapies that the consumer is applying.
• Health promotion has been a key component of Canadian health policy for the past 25 years. It would appear to provide an opening for complementary and alternative approaches to health and well-being. A core message for all modalities of health promotion might be 'taking responsibility for health.' However, the various promoters of health might have quite different understandings of what that means. To what extent are practitioners prepared to support a notion of health promotion other than their own?
• The mandates of government agencies, professional associations or health intermediaries can limit their effectiveness in providing information about complementary and alternative therapies. For instance, the mandate of the Canadian Health Network prevents it from providing recommendations about treatment, whereas many people regard treatment as a way of promoting their health. Similarly, Canadians may look to Health Canada as an authoritative source of information about health care, but constitutional responsibility for health care (and decisions on the care that will be provided) belongs to the provincial and territorial governments. Likewise, people may regard professional associations as authoritative sources of information, but professional associations may decline to provide recommendations about specific practices and products for fear of professional disrepute or legal liability.
• One's options and decisions with regard to health and health care are influenced by one's ability to pay for services and products. Currently, many complementary and alternative therapies are not covered by public or private insurers. This limits access to these therapies to people who can afford them. People of limited means (such as people with chronic or disabling conditions) are forced to choose between these therapies and other basic necessities. People often use complementary and alternative therapies to promote health and well-being. This may, in fact, prevent illness and disease and the concomitant health care costs. But there is no comprehensive algorithm by which the cost-benefit and cost-effectiveness of all therapies - conventional as well complementary and alternative - can be assessed so as to determine whether they should be covered by public or private insurance. As a result, people who promote their health by using complementary and alternative therapies are penalized financially for their efforts.
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Ways forward

Building blocks

Participants in the roundtable identified a number of 'building blocks' toward improving connections, consistency and integration in providing information. These include:

• a common message (such as 'taking responsibility for health') for the public and practitioners, which would accommodate the diversity of complementary and alternative therapies
• an authoritative reference for the therapy (probably not possible for all therapies, particularly those outside major, well-known modalities)
  
• harmonized undergraduate and continuing education for conventional practitioners on complementary and alternative therapies
  
• education for complementary and alternative practitioners in conventional medical science and research methods
• sensitivity to and awareness of consumers' interests, needs and wants (practitioners and health intermediaries have a role in this regard)
• assistance provided by health intermediaries to help the public to find good quality information
• access in health institutions to databases about complementary and alternative therapies, and education for practitioners on the use of these databases
• industry collaboration in promoting and communicating standards in the manufacture of natural health products (such as a statement on the label of a natural health product that the product is produced in conformity to Health Canada's standards)
• government leadership and commitment in moving toward a more integrated approach to health and health care by, for example, developing policy that is consistently inclusive of complementary and alternative therapies; developing information tools such as a bilingual thesaurus; promoting the development of curriculum for practitioners; developing generic monographs and using them to educate practitioners and the public

Short-term strategies

Participants in the roundtable suggested several strategies that might be effective in the short-term:

• building on existing or emerging networks to foster communication and links between practitioners and consumers
• working to find common ground or to expand common ground with partners that are relatively open to complementary and alternative therapies (such as consumer health associations, family physicians, nurses)
• building on regulatory and licensing processes to foster professional development for complementary and alternative practitioners and to build relationships between conventional practitioners and complementary and alternative practitioners
• using the generic product monographs to be published by Health Canada to contribute to public and practitioner education
• developing a bilingual thesaurus (in Canada's official languages) of terminology for complementary and alternative therapies
• gathering data on the use of complementary and alternative therapies in the population through surveys and research
• situating efforts to support informed choice in the use of complementary and alternative therapies within the context of supporting informed choice in general
• providing input to the Romanow Commission to connect issues related to complementary and alternative therapies to the wider policy debates about health care in Canada

Appendix A - List of Participants

Sarah Baillie
Canadian Naturopathic Association
Halifax, Nova Scotia

Joanne Barnes
University of London
London, United Kingdom

Bethany Becker
Tzu Chi Institute for Complementary & Alternative Medicine
Vancouver, BC

Heather Boon
University of Toronto
Toronto, Ontario

Carole Durand
Prévost, Québec

Gerry Harrington (regrets)
Non-prescription Drug Manufacturers Association of Canada (NDMAC)
Ottawa, Ontario

Donna Herringer
Canadian Health Food Association
Markham, Ontario

Sandra Iverson
The Canadian College of Naturopathic Medicine
Toronto, Ontario

Phyllis Jensen
McMaster University
Hamilton, Ontario

Gillian Leverkus
Canadian Herbalist's Association of British Columbia
Mill Bay, British Columbia

Ted Lo
Friends of Alternative and Complementary Therapies (FACT)
Toronto, Ontario

Allison McCutcheon
University of British Columbia
Vancouver, British Columbia

Debbie Monkman
Tzu Chi Institute for Complementary & Alternative Medicine
Vancouver, British Columbia

Susan Murray
Consumer Health Information Service (CHIS)
Toronto, Ontario

Robbert Scholten
Harvard Medical School
Boston, Massachusetts, USA

Anne Swarbrick
Community AIDS Treatment and Information Exchange (CATIE)
Toronto, Ontario

Sally Thorne
University of British Columbia
Vancouver, British Columbia

Health Canada Representatives

Joan E. Simpson
Ottawa, Ontario

Michael J. Smith
Ottawa, Ontario

David Hoe
Ottawa, Ontario

Irma Boyle (Observer)
Ottawa, Ontario

Christine Burgess (Observer)
Vancouver, British Columbia

Facilitators

Theodore de Bruyn
Ottawa, Ontario

Terry Howard
Vertical Hold Enterprise
Vancouver, British Columbia

Appendix B - Agenda

Sunday, October 21

6:00 p.m.

Buffet supper

Welcome and opening remarks from Health Canada.

7:00 p.m.

Roundtable: Opening statements from the participants

Participants will introduce themselves and describe what they think are the top challenges in providing information and supporting informed choice in the use of complementary and alternative health care and natural health products. Each participant will have about 5 minutes.

9:00 p.m.

Adjournment

Monday, October 22

8:30 a.m.

Introduction to the process for the day

9:00 a.m.

Concurrent small group discussions on:

(1) sources and systems of expert information;

(2) collecting, evaluating, selecting, and presenting accessible information for practitioners and users.

Each group will discuss the key challenges and suggest ways to address those challenges.

11:00 a.m.

Report-back and discussion in plenary.

Each group will have an opportunity to report on its discussions and to comment on the report of the other group's discussions.

12:00 a.m.

Lunch (to be provided in the meeting room)

1:00 p.m.

Concurrent small group discussions on:

(3) public and professional education in receiving and using information;

(4) connections, consistency, and integration in providing information

The process will be the same as at 9:00 a.m., but the composition of the groups will be different.

3:00 p.m.

Report and discussion in plenary

The process will be the same as at 11:00 a.m.

4:00 p.m.

Evaluation and wrap-up

4:30 p.m.

Adjournment

Appendix C - Participants' Replies to Questionnaire about Five Top Challenges

Participant I

The challenges become apparent when one tries to map out the vision for a system that would enable the provision of information and the support of informed choice. Some of the components of such a system (and consequently the challenge to create) include:

1. a) Quality research based on product standards that match those available to the consumer. This implies such additional challenges as funding, a system for selecting priorities, etc.
   
   b) An independent testing system or centre to ensure that what's on the label is what's in the product; as well as to ensure what's NOT in the product (e.g., pesticides)
   
   
2. Credible independent source(s) for collecting data and making the information available.
   
   
3. Consumer awareness of, and access to, the data source(s):
   
   a) through a centralized vehicle (e.g., Internet)
   b) in the community - Health Canada's Environmental Scan on HIV/AIDS Treatment
   
   Information indicates that most people want access to treatment information in their own community, through their physicians, family and friends, and community organizations (e.g., information and health centres)
   
   
4. (Affordable) consumer access to practitioners who:
   
   a) are knowledgeable in the products, and how they relate and interact with other medical treatments
   b) have open attitudes to the wide range of treatments (complementary/alternative and allopathic) in order to seek the highest synergistic effect
   
   This implies the need for an integrated health care service delivery system.
   
   A sub-challenge, however, involves the complexity and confusion regarding products and the contexts for their use (e.g., Traditional Chinese Medicine usage of the various ginsengs).
   
   
5. Consumer education to build awareness as to when to seek professional advice about complementary and alternative health care products. This would increasingly result as a consequence of an integrated health care system.
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Participant II

1. Finding, gathering and obtaining reliable information.
   Problems include:
   
   1. relevant journals for natural health products are not always included on standard medical databases eg MEDLINE, PUBMED, although this situation is improving
   2. some journals are difficult to obtain, or it is expensive for researchers to obtain copies of published papers
   3. papers published in other languages
   4. some papers, eg reports of clinical studies, are sometimes inadequate and do not include all relevant details
2. Interpreting and evaluating information:
   
   1. information, eg clinical efficacy and safety studies, needs to be interpreted by individuals with critical appraisal skills, knowledge of research methodology, basic statistical skills etc. Most health-care professionals do not have these practised skills, or the time to evaluate research even if they did
   2. information needs to be interpreted in context and against a working knowledge of other relevant literature, eg other studies
   3. information may need to be interpreted with respect to who is going to use it
3. Quality of information:
   
   1. poor quality studies and poor-quality reports of studies can be a problem (see #1, above)
   2. consumers may use websites that may not provide accurate, reliable and up to date info
4. Disseminating information, accessibility to users:
   
   1. how to get the evaluated, interpreted and summarised info to those who are going to use it, including health-care professionals, eg pharmacists, and consumers, eg use of websites, hard copy publications
   2. issues include how to communicate risk of product adverse reactions to patients and consumers, eg likelihood and frequency of ADRs
   3. an issue in the UK is how the public can distinguish between licensed and unlicensed products; furthermore, it is even harder to distinguish between unlicensed products that are of good quality and those that are not
5. Currency
   
   1. how to keep information sources up-to-date

Participant III

1. Public perception of CAM needs to be raised through education and well-educated practitioners (licensing, colleges, etc.).
2. MDs must have a more balanced viewpoint towards CAM. Nurses, pharmacists, health food store owners should have some complementary training (standards).
3. Not enough funding for scientific trials for efficacy and contra-indications of herbal medicine.
4. Herbal medicine too cost prohibitive. Needs to be recognized by all extended medical plans, etc.

Participant IV

1. Absence of Canadian non-profit/nongovernmental resources providing comprehensive information about safe, evidence-based usage of NHPs.
2. Lack of ease of utilization of existing tools, such as the U.S.-based IBIDS database. Simply put, they are not consumer-friendly.
3. Absence of agreement on matters such as dosage guidelines for vitamins and minerals, among existing publications emanating from the same source, i.e., Health Canada.
4. Reluctance of government-sponsored, consumer-oriented initiatives to provide the Canadian public with evidence-based information on safe/appropriate use of NHPs as drugs or treatments. (This pertains to the constraints of CHN's mandate).
5. Limited accessibility, both in the physical sense of the ability to obtain and/or afford to buy or consult resources, and in the sense of language and literacy barriers. Most information about NHPs is written at a very high literacy level and assumes conversance with medical terminology.

Participant V

1. Lack of consistency in information provided by other NDs/ practitioners.
2. Lack of research.
3. Too much garbage on Internet ... need to educate myself and patients on how to determine validity of the information.
4. Naturopathic care does not fit easily into the much-demanded "evidence-based" paradigm.
5. Conventional system dismissing naturopathic medicine due either to ignorance (educating physicians would take care of that) or hostility. (This is not always, but it is an obstacle).

Participant VI

1. Costs: While I have reasonably good access to information, I cannot provide access to this information to any other constituency other than my own, without absorbing the costs or charging the consumer - and most information consumers do not wish to pay.
2. Quality of information: A substantial body of information on CAM is opinion, anecdotes and product manufacturer's promotional materials (often produced in a form that appears to be an objective article) - this is particularly true of information found on the Internet.
3. Information literacy: Are Canadians information literate? Do they have the skills required to make 'informed choices'. For those who don't (and this can include many intelligent successful people) what responsibility do we have to assist people in acquiring these skills and how would we do it?
   An information literate person possesses the following qualities:
   
   1. The ability to recognize that information can be helpful in decision-making and that the right information can help make things better;
   2. The ability to know where to go to get information and how to retrieve it;
   3. The ability to evaluate information as a critical information consumer;
   4. The ability to process information; that is, the ability to think about information, analyze it and extrapolate what is valuable at that particular time in a person's life - all higher-order thinking skills; and
   5. The ability to use and communicate information.
4. Locating quality CAM information: While there have been some improvements here with more databases being produced, there are still issues especially in regards to publishing (many small presses that major distributors don't deal with) AND terminology (no standards to describe this body of knowledge).
5. Consumer resistance / information overload: Many people are stressed by the sheer volume of information coming at them on a daily basis in this society and are somewhat disinterested in attempting to digest more: They want the information in a palatable (usually meaning brief) and reliable format and they want it quickly and for free.

Participant VII

1. To be more responsive to the growing demand for health information by striking a better balance between the need to ensure high quality standards for such information and the need to get that information into the hands of Canadians.
2. To continue to develop a broader and deeper scientific understanding of CAM and NHPs.
3. To increase the consistency of the information relating to CAM/NHPs through the various media it is transmitted (including practitioners).
4. To ensure that information systems in all parts of the Canadian health care system are capable of collecting/disseminating CAM/NHP-related information.

Participant VIII

1. In the case of certain modalities - massage therapy, homeopathy, naturopathy, to name a few - there are no strong centralized associations that are capable of establishing authoritative documents such as best practice, codes of conduct, prioritized research agendas, standardized licensing, coding of therapeutics, outcomes, medical record keeping, etc. It is therefore difficult to evaluate informal sources of data on these therapies, as no systematic benchmarking information is available.
2. In the case of interventions that fall outside major, well-known modalities - zero balancing, oxygen therapy, color therapy, cranio-sacral therapy, Gershon, Naessens to name a few - it is impossible to establish authoritative literature as there is almost no research base whatsoever, and the 'experts' in the field are often self-appointed and have rarely benefited from the peer-review process.
3. In the case of dietary supplements and topical applications that are the product of complex, undifferentiated mixtures - animal adrenal products, herbal preparations, other botanically-derived products, meal-replacement products, to name a few - the lack of manufacturing standards and batch-to-batch consistency makes it impossible to argue efficacy from previous clinical trials using products that bear the same name but are otherwise incomparable to current products.
4. The perception by the medical professional that the consumer is unfit or unable to make sound medical judgments about self-care has produced a basic conflict in the medical system where physicians are not pre-disposed to help the consumer answer their own questions from online or book sources, yet are the only people capable of authoring them. Many physician-sponsored websites are often thinly disguised profit ventures for physicians who have a product or service they wish to sell. Governments are poorly equipped to create credible self-care knowledge bases. HMOs and insurers have generally failed to properly utilize the self-care movement to reduce their costs.
5. Obtaining solid outcomes data on integrative treatment strategies that rely on a combination of therapies from various modalities is challenging because few models exist for comparison across cohorts when the number of variables involved is high. Yet, it is well known that the value of complementary medicine lies precisely in its ability to modulate standard therapies favorably.
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Participant IX

1. Lack of reliable, objective information.
2. Too many (poor quality) information sources for patients.
3. Poor quality of research and reporting of research.
4. Our lack of understanding of how patients make decisions.
5. Patients' reliance on the experiences of their friends and families when making decisions about health care.

Participant X

1. Producing information (what do you have?) - Setting priorities on what to produce (see also #4 below). Not reinventing the wheel (knowing what others are doing, developing a niche, decision making around whether to evaluate/use/purchase existing resources versus develop our own). We also have a difficult time finding people who understand the area well enough to write about it.
2. Acquire, organize & make available resources (where can I get it?) - Collecting CAM resources is done in a scattered fashion. Where do I go to borrow books, use computer databases, learn about organizations, learn how to use the Web, etc.? While work is being done with Web-based resources through CHN, and public libraries can respond to some public needs, there are very few specialized resource collections on CAM.
3. Connecting with experts (who can I talk to?) - Since much of CAM practice has not yet been evaluated and recorded in the manner of conventional health care treatments, health professionals need to rely on expert advice. There are informal linkages within health systems but not between systems. How do I link a pharmacist and physician at a community hospital with a Chinese herbal medicine specialist who can (1) interpret a prescription for herbal remedies written in Chinese, (2) explain the pharmacology of the herbs, and (3) consult concerning their possible effect on the patient's condition (multiple organ failure)? Similar issues arise with consumers - how can they be connected to the best person/organization that can help them understand information.
4. Disseminating information (how can I find out more about...?) - communicating complex ideas or philosophies in clear language that is understood. This is not only about using jargon that is not well understood, but also about the challenge of moving people from a simplistic medical model notion of CAM to an understanding of mind-body-spirit-energy influences on health. For example, the notion of 'what CAM therapies should my husband use for his heart disease' becomes a need to assess, through a series of complex questions, the individual's health beliefs and health goals, rather than simply providing information about remedies shown to be effective for heart disease.
5. Disseminating information (how can I find out more about...?) - ensuring reliability and appropriateness of information. In far too many cases, the existing printed information from magazines and Web sites cannot be considered reliable. This is especially the case for the less common or very new therapies and conditions - and these are the areas we are most likely to receive questions on. Until better resources are created, consumers must be assured access to all types of information. However, to help them make their own informed decisions about their health, they need be educated about health information literacy.

Participant XI

1. Creating collaboration over the whole network, so that the information received and given is the same from all the members of the network.
2. Increasing the seriousness of the image of alternative medicine by publicizing studies and experiments.
3. A lot of treatments are of great interest and value, so it is important to inform doctors and specialists about the results of these treatments. This could be done by training the different collaborators.
4. Making the distinction between a therapeutic product and an 'off-the-shelf' product.
5. Making the products more affordable for users.

Participant XII

1. Lack of authoritative/evidence-based CAM resources written at a level that consumers can understand. The peer review process is not as well established or prevalent as in mainstream medicine.
2. Lack of standardized terminology for the very wide range of complementary and alternative practices.
3. Lack of regulation/standardization of "natural health products" coupled with their growing availability and promotion that leads to confusion in the public as to the potential benefits of these products. We are often presented with questions about commercial products that have no supporting research, other than that conducted by their manufacturer/marketer.
4. Consumers' lack of knowledge regarding the difference between mainstream medicine and practices, (including drugs) and complementary and alternative health. Consumers assume that because a product is "natural," it is safe for indiscriminate consumption and that Health Canada regulates these products.
5. Lack of information about CAM practitioners, i.e. absence of comprehensive directories/listings, qualifications, regulation, and complaint procedure.

Participant XIII

1. Health information on products and therapy - types of sources, and human resources required to collect, review, and present information in a useful manner.
2. Accessible and objective information on practitioners.
3. Distribution mechanisms - various media and the necessary marketing.
4. Education of the public on the acquisition and use of information.
5. Sharing of information among all health professions, mainstream and alternative.

Participant XIV

1. Conceptualizing the nature of evidence (as in evidence for efficacy, safety etc) and creating public awareness of how to interpret evidence.
2. Creating appropriate safety strategies that balance evidence of various types.
3. Creating appropriate public safeguards with regard to claims about products (both conventional and CAM included).
4. Creating mechanisms to integrate referrals and respect between practitioners of various stripes.
5. Creating appropriate research methodologies capable of reflecting various knowledge traditions, healing traditions and aspects of the human health/illness experience.

Participant XV

1. Evaluating relevance and efficacy of perceived therapy/product for desired outcome with subsequent monitoring and post-marketing surveillance, particularly for NHPs.
2. Discerning claims of manufacturers/therapists against desired outcome for user's need.
3. Integration of information on complementary and alternative health approaches (especially NHPs) with other approaches.
4. Information to assist a user's approach to assessing modalities, costs, outcomes and integration and interaction with other approaches and products (medications).
5. Mechanisms for information and support on making informed choices.

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1 In August 2001, Health Canada sponsored a workshop on educating complementary and alternative practitioners in research literacy.

2 The Association of Canadian Medical Colleges, in collaboration with Health Canada, is currently undertaking a pilot project in undergraduate medical education in complementary and alternative therapies at the University of Calgary.