The Role of Natural Health Products and Complementary and Alternative Health Care in HIV/AIDS - Developing a Research Agenda: An Invitational Roundtable

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Table of Contents

• Executive Summary
  • Objectives
  • Process
  • An overarching principle
  • Priorities
  • Final recommendation
• Introduction
  • Objectives
  • Process
• Natural Health Products Research
  • Synopsis of the topic
  • Areas for research
  • Report to plenary
• Health Practices/Services Research
  • Synopsis of the topic
  • Research approaches and priorities
  • Report to plenary
• Building Research Capacity
  • Synopsis of the topic
  • Areas for capacity building
  • Report to plenary
• Methodological Development
  • Synopsis of the topic
  • HIV/AIDS-specific methodological challenges
  • Areas for methodological development
  • Report to plenary
• Research Dissemination and Uptake
  • Synopsis of the topic
  • Areas of development
  • Report to plenary
• Building and Strengthening Liaisons
  • Synopsis of the topic
  • Areas of development
  • Report to plenary
• Final Recommendation
• References
• Appendix A: List of Participants

Executive Summary

A roundtable on developing a research agenda on the role of natural health products (NHPs) and complementary and alternative health care (CAHC) in HIV/AIDS was convened by the Natural Health Products Directorate (NHPD), in collaboration the Health Human Resource Strategies Division and the HIV/AIDS Policy, Coordination and Programs Division of Health Canada. This roundtable was one of several meetings on research priorities being held with populations known to use CAHC and NHPs.

Objectives

The objectives of the roundtable were as follows:

• to assist in the further development of a research agenda in the area of NHPs, CAHC and HIV/AIDS
• to build capacity to conduct research in Canada in NHPs and CAHC, with HIV/AIDS serving as an area with readiness to explore ways to accomplish this
• to contribute to the NHPD's process of identifying and advancing research priorities in NHPs and CAHC within the national arena

Process

The roundtable focused on six aspects of research on CAHC and NHPs:

1. NHP research
2. health practices/services research
3. building research capacity
4. methodological development
5. research dissemination and uptake
6. building and strengthening liaisons

In light of potential synergies between the HIV/AIDS field and the broader field of CAHC and NHPs, the instructions to the participants were, for each of the above six areas:

• to identify priorities or opportunities for research or research-related activities
• to select the top three priorities or opportunities
• to identify strategies to advance the top three priorities or opportunities

An Overarching Principle

Participants agreed that consumers need to be involved at all stages of the research process (the design and implementation of the project, and the analysis and dissemination of the results) and in each of the priorities identified below. This overarching principle of access to, and ownership and control of, the research process - which is central to research involving Aboriginal peoples, traditional Aboriginal healers and Aboriginal healing practices - has been endorsed in general by people with HIV/AIDS.

Priorities

Participants identified the following priorities in each of the areas under discussion.

Natural health products research

Priority #1:
research on beneficial and detrimental interactions: interactions among NHPs (NHP-NHP interactions) and interactions between NHPs and drugs used by people with HIV/AIDS (NHP-drug interactions)

Priority #2:
focus on NHPs used in treatment and support of HIV/AIDS-related conditions (side effects, toxicities, opportunistic infections, etc.)

Priority #3:
prioritize the NHPs to be researched first

Health practices/services research

Participants identified an overarching theme for research in this area: research to advance integration across the continuum of health care practices and services, with a special focus on CAHC and NHPs. Participants also identified guiding principles for the research and possible research projects.

Priority #1:
funding and capacity building of integrative research teams working on CAHC and NHPs with a focus on HIV/AIDS

Building research capacity

Priority #1:

1. training in conducting research and using research findings for CAHC practitioners, educators, students and community members
2. funding for CAHC practitioners to write up case reports
3. a focus on Aboriginal access to, and ownership and control of, the research process

Priority #2:
leveling the playing field to gain equal access to research funds

Priority #3:
funding for training awards, research projects and research infrastructure in CAHC and NHP research

Methodological development

Priority #1:
establish standards of evidence and research

Priority #2:
education and training in standards of evidence and research for CAHC practitioners and educators, and for conventional practitioners and researchers

Priority #3:
foster research skills in CAHC and NHPs among practitioners and researchers

Priority #4:
educate funding review panels and research ethics boards about CAHC and NHP research, methods and standards of evidence

Research dissemination and uptake

Priority #1:
reviews of research on CAHC and NHPs

Priority #2:
assessment of information needs of target audiences

Priority #3:
dissemination and uptake strategies

Building and strengthening liaisons

Participants identified the sectors in which awareness of and involvement in CAHC and NHP research need to be strengthened - researchers, funders, community organizations, hospitals and clinics, practitioners, professional associations, educational institutions, information providers and the media - and discussed ways to do this.

Priority #1:
time, resources and institutional support to work specifically on building partnerships and promoting research on integrative health care

Final Recommendation

To develop research on CAHC and NHPs in the field of HIV/AIDS, it is necessary to have the time and resources to build partnerships, to explore opportunities and to increase the profile of CAHC and NHPs in existing HIV/AIDS networks and programs.

There was overwhelming consensus that funding for a dedicated staff person is necessary to undertake activities to build research on CAHC and NHPs in the field of HIV/AIDS. The following activities were identified but were not prioritized:

1. Build on existing HIV/AIDS observational databases (British Columbia Centre for Excellence in HIV/AIDS, the HIV Information Infrastructure Project) to gather information about the use of CAHC and NHPs among people with HIV/AIDS in relation to conventional health care and treatments.
2. Identify and build relations with partners in research on CAHC and NHPs (funders, industry, HIV/AIDS researchers and practitioners).
3. Increase the awareness in the HIV/AIDS field of research on CAHC and NHPs at the annual conferences of the Canadian Association of HIV Research and at the XVI International AIDS Conference to be held in Toronto in 2006.
4. Disseminate information through existing HIV/AIDS networks about research opportunities and share information about research initiatives in CAHC and NHPs.
5. Liaise with broader networks and evolving initiatives in CAHC and NHPs.
6. Facilitate the development of research on Aboriginal healing practices in relation to HIV/AIDS.

Introduction

As part of its mandate to facilitate research in natural health products (NHPs) and related areas, the Natural Health Products Directorate (NHPD), Health Canada, has held meetings on research priorities with regard to specific populations with a demonstrated use of NHPs. One of these populations is people with HIV/AIDS. People with HIV/AIDS have used complementary and alternative health care (CAHC) and NHPs since the earliest days of the epidemic. The prevalence and characteristics of this use have been described in studies in British Columbia,¹ Ontario² and other parts of Canada.³ The implications for policy and programs have been considered in a number of reports published under the auspices of the Canadian Strategy on HIV/AIDS.⁴ These reports have noted the need for further research on numerous aspects of the use of CAHC and NHPs by people with HIV/AIDS.

The Invitational Roundtable on the Role of Natural Health Products and Complementary and Alternative Health Care in HIV/AIDS was convened by the NHPD, in collaboration with two other divisions in the department: the Health Human Resource Strategies Division and the HIV/AIDS Policy, Coordination and Programs Division. While the role and responsibilities of the NHPD relate particularly to NHPs, the Health Human Resource Strategies Division is active in the broader field of CAHC, and the HIV/AIDS Policy, Coordination and Programs Division has responsibility for the planning and the programs of the Canadian Strategy on HIV/AIDS.

Objectives

The objectives of the roundtable were as follows:

• To assist in the further development of a research agenda in the area of NHPs, CAHC and HIV/AIDS first established in the document, "Toward Integrative Care - Final Report from a National Strategic Planning Meeting on Complementary Therapies and HIV/AIDS." This report, along with others referred to above (note 4), have set out the main lines of a research agenda in NHPs, CAHC and HIV/AIDS. The purpose of the roundtable was to further develop this agenda by suggesting specific steps.
• To build capacity to conduct research in Canada in NHPs and CAHC with HIV/AIDS serving as an area with readiness to explore ways to accomplish this. There is widespread recognition of the need to build research capacity - to increase the ability and readiness of individuals and organizations to identify, develop and conduct research - in NHPs and CAHC in Canada. Specific steps are now needed in order to do this in areas where there is sufficient readiness. HIV/AIDS may be one such area.
• To contribute to the NHPD's process of identifying and advancing research priorities in NHPs and CAHC within the national arena. The NHPD is seeking to identify and advance research priorities both through its own funds (intended primarily for developmental purposes) and in collaboration with other funders (such as Canadian Institutes of Health Research, the Hospital for Sick Children Foundation and other funders).

Process

The roundtable began with an overview of the roles and recent activities of the NHPD, the Health Human Resource Strategies Division and the HIV/AIDS Policy, Coordination and Programs Division with regard to CAHC and NHPs. This was followed by an overview of the process for the roundtable, including the proposed topics for the small group sessions:

• NHP research
• health practices/services research
• building research capacity
• methodological development
• research dissemination and uptake
• building and strengthening liaisons

In light of potential synergies between the HIV/AIDS field and the broader field of CAHC and NHPs, the objectives for the small group sessions were:

• to identify priorities or opportunities for research or research-related activities
• to select the top three priorities or opportunities
• to identify strategies to advance the top three priorities or opportunities

Prior to each small group session, a draft synopsis of the topics under discussion was reviewed and revised in plenary. (The synopsis is included under each topic below.) The small groups then discussed the topics - two concurrently in each session - and reported back to plenary. In plenary there was further opportunity to refine the reports and recommendations of the small groups.

All the reports and recommendations of the small groups were reviewed in the last plenary session of the roundtable and a specific recommendation was made regarding next steps.

Natural Health Products Research

Synopsis of the topic

Consultations in Canada about research on NHPs have identified a number of recurring priorities. These have included:

• the review and evaluation of existing research
• product standards and quality control methodologies
• the methods to characterize NHPs
• the safety, efficacy, risks, dosage, indications and counter-indications of NHPs
• the pharmacological action of NHPs related to benefits, harms and interactions
• NHP-drug interactions
• the utilization of NHPs, especially widely-used NHPs or NHPs used extensively by specific populations
• the role of NHPs in managing HIV/AIDS and/or HIV antiretroviral therapy
• the role of NHPs in managing hepatitis C

In reviewing these priorities, participants noted, in addition, the importance of:

• investigating beneficial synergies between NHPs and drugs, as well as adverse interactions between NHPs and drugs
• investigating interactions between NHPs and other CAHC practices
• the role of NHPs in managing co-infection with HIV and hepatitis C, which presents unique challenges
• the unexplored field of psycho-neural immunology, which investigates, e.g., how the placebo effect works to improve health or how people's sense of locus of control contributes to the healing process
• the broader context of people's use of NHPs and their concerns within that context, e.g., concerns about effects of conventional drugs, about losing access to NHPs once they are regulated, etc.
• the challenges in communicating research findings about NHPs, particularly preliminary results that can easily be misrepresented and misapplied

Areas for research

The group identified and discussed the following areas that need research (in no particular order of importance):

1. NHPs used in the treatment and support of HIV-related conditions

• bone loss
  
• liver disease
  
• hepatitis B and C co-infection
  
• cardiovascular risks (e.g., mitochondrial toxicity)
  
• lipodystrophy and lipoatrophy
  
• metabolic disorders (e.g., insulin resistance)
  
• wasting
  
• neurological disorders (e.g., peripheral neuropathy)
  
• depression
  
• sexual health
  
• addiction
  
• immune-based therapies
  
• hormone disregulation

2. Specific priorities in regard to products used by people with HIV/AIDS

• patterns of use
  
• cultural context of use
  
• dietary protocols and basic nutrients
  
• immunological support: SPV30, immune-based therapies
  
• l-carnatine: oral versus intravenous, required dosage for different forms
  
• milk thistle

3. Research into different formulations, concentrations and routes of administration

• different formulations have different effects
• different concentrations have different pharmacological properties and different pharmacological effects

4. Side effects and toxicities

• use of NHPs in managing side effects and toxicities of antiretroviral therapies
• safety and efficacy of NHPs used to manage side effects and toxicities (both in clinical trials and in the community)

5. Beneficial and detrimental interactions

• interactions between NHPs and antiretroviral therapies
• interactions between NHPs and other drugs commonly used in treating HIV/AIDS
• interactions among NHPs

6. Quality assurance

• botanical identity of products
• screening of biological markers
• efficacy of formulas
• quality of NHPs used in clinical trials
• quality control of products sold: Does the product match its description?
• issues related to active ingredients

7. Screening new antiretroviral drugs

• include NHPs in pharmacokinetic and pharmacodynamic studies of new antiretroviral drugs

Report to plenary

Priority #1:
Research on beneficial and detrimental interactions: interactions among NHPs (NHP-NHP interactions) and interactions between NHPs and drugs used by people with HIV/AIDS (NHP-drug interactions)

Strategies:

• Encourage industry, by identifying champions, to include NHPs when conducting in vitro and in vivo pharmacokinetic and pharmacodynamic studies.
  
• Encourage investigators to do pharmacokinetic and pharmacodynamic studies before undertaking a clinical trial of an investigational drug.
  
• Encourage manufacturers of NHPs to identify the metabolic pathways of their products.
• Fund small laboratories to conduct research on interactions by building partnerships in many arenas:
  
  • domestic and international partnerships
  • partnerships with industry, Canadian Institutes of Health Research, the Natural Sciences and Engineering Research Council of Canada, the Canadian HIV Trials Network, the Canadian Foundation for AIDS Research, health insurance companies
  • partnerships between small laboratories with expertise and structures in place
• Explore, with the Canadian HIV Trials Network, the possibility of pharmaceutical manufacturers adding an additional arm involving NHPs to their clinical trials of antiretroviral drugs.
  
• Identify opportunities to incorporate priorities on research on NHPs into the agendas of the Institutes of Canadian Institutes for Health Research.
• Develop and disseminate (particularly to funding agencies) a 'gold standard' protocol to be used in research on interactions:
  • Product investigation
    • authenticate the product
    • identify the geographic source of the plant form of the product, if possible
    • identify the formulation(s) most relevant to the user population
    • biomarker concentration or peak profile
    • single or repeated use
  • In vitro studies
    • Phase I studies to identify iso enzymes most associated with drug regimen (e.g., cytochrome P450)
    • Phase III studies to identify transport proteins (e.g., ABCB1 or P-glycoprotein)
  • Clinical studies
    • Phase I studies to identify iso enzymes most associated with drug regimen (e.g., cytochrome P450)
    • Phase III studies to identify transport proteins (e.g., ABCB1 or P-glycoprotein)
    • Therapeutic Drug Monitoring to determine drug (and possibly biomarkers) plasma levels
• Create a safety board for NHPs to confirm the safety of a product and to review adverse events:
  • base the review procedures on the above 'gold standard' protocol
  • seek information on the drug and/or product plasma levels
• Develop a database of NHP interactions.
• Establish a Centre of Excellence in research on NHPs.
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Priority #2:
Focus on NHPs used in treatment and support of HIV/AIDS-related conditions (side effects, toxicities, opportunistic infections, etc.)

Strategies:

• Involve health care providers who specialize in HIV-related conditions and people with HIV/AIDS in identifying and prioritizing the conditions (see list above) where possible beneficial effects of NHPs need to be investigated.
• Raise awareness of HIV-related conditions among manufacturers of NHPs.
• Communicate priorities regarding NHPs and HIV-related conditions to Canadian Institutes of Health Research and other funding bodies (provincial as well as federal).
• Build on existing observational databases (e.g., the British Columbia Centre for Excellence database of people receiving antiretroviral therapy; the Ontario HIV Information Infrastructure Project) to develop a database of utilization of complementary and alternative products, practices and practitioners by people with HIV/AIDS.
  • Participants observed that it would be worthwhile to explore the possibility of a common data set on use of complementary and alternative products, practices and practitioners, to be used by the British Columbia Centre for Excellence, the Ontario HIV Information Infrastructure Project and other HIV observational databases in the country.
  • Given the constraints of existing databases, it may be necessary to establish a parallel database (which can make use of the demographic and health care data in the existing databases) to capture more complete information about use of complementary and alternative products, practices and practitioners.
• Lobby for an Office of HIV/AIDS Research within Canadian Institutes for Health Research, which would include a focus on NHPs.

Priority #3:
Prioritize the NHPs to be researched first

Strategies:

• Conduct studies of the utilization of NHPs by people with HIV/AIDS.
• Encourage existing observational databases to include information on the use of complementary and alternative products, practices and practitioners (see above).
• Give priority to conditions for which there are few or no conventional medicines.
• Collaborate with researchers, health care providers and professional associations to obtain more information about possible conditions to be studied and to identify what conditions to investigate first.
• Ensure that the research agenda is driven by the needs of people with HIV/AIDS rather than by the needs of industry (community-driven research priorities).
• Provide funding for research grants.

Health Practices/Services Research

Synopsis of the topic

Health practices research includes research to understand complementary and alternative modalities of practices and care, document their health outcomes, determine their efficacy, establish their cost-effectiveness, etc. Health services research includes research into the ways in which CAHC is provided, different types of combinations of CAHC and conventional health care, the costs of CAHC, etc. Suggested areas of activity have included:

• research on the utilization of complementary and alternative practices and practitioners
• review and evaluation of existing research
• case reports and case series of CAHC
• controlled pilot studies to build bridges between complementary and alternative and conventional practitioners
• research on models of integrated health care
• research on the pathways of decision-making for people with HIV/AIDS in using complementary and alternative practices or services, and the role of various others - friends, community organizations, information providers, health care providers, etc. - in supporting informed decision-making
• research on the efficacy - broadly conceived to include not only biological markers but also quality of life measures - and cost-effectiveness of complementary and alternative practices or services
• role of complementary and alternative practices or services in managing HIV/AIDS and HIV antiretroviral therapy
• role of complementary and alternative practices or services in managing hepatitis C;
  
• role of complementary and alternative practices or services in managing co-infection with HIV and hepatitis C

In reviewing these suggested areas for research, participants noted the following:

• People use complementary and alternative practices or services for many different reasons, and the perceived benefits do not relate merely to efficacy narrowly conceived as a change in a biological marker. The health outcomes of complementary and alternative practices and services are often broad, and include quality of life as well as clinical improvements. Research must register this broad range of outcomes, particularly outcomes related to quality of life.
• Access to complementary and alternative practices and services is a key issue for people with HIV/AIDS. Integration between systems of health care is a priority.
• It is artificial to separate research on complementary and alternative practices and services from research on NHPs, since people in fact use both and many forms of CAHC combine both.
• It is challenging to translate the philosophy of a complementary and alternative practice into an entity that can be measured in research. 'Cultural transliteration' of the complementary and alternative paradigm of health and health care is necessary.
• One cannot assume that conventional research methods cannot be used to investigate a complementary and alternative practice or service.

Research approaches and priorities

1. Models of integrated care

A recurring theme in the small group discussion was the need to identify and examine models of integrated health care. Examples mentioned by participants included:

• Integrated health care at the clinical level for people with HIV/AIDS. The Sherbourne Health Centre in Toronto has conducted a study of chiropractic care for people with HIV/AIDS that combines biological measures (viral load and CD4 cell counts) with quality of life measures.
• Integrated health care for Aboriginal people with HIV/AIDS. Models that promote integrated health care for Aboriginal people with HIV/AIDS include: the Non-Insured Health Benefits administered by the First Nations and Inuit Health Branch, Health Canada, which pays for transportation costs to access traditional healers; the Nine Circles Community Health Centre in Winnipeg, which provides integrated, client-centred primary health care; and models developed for other conditions, such as diabetes, in which traditional healers work alongside physicians.
  
• Integration between CAHC and conventional health care. Integration between these systems needs to happen on several fronts, including health care delivery, research, policy and decision-making.
• An integrated approach to the management of chronic disease, including prevention and surveillance, research and evaluation, education of practitioners and consumers, management of care and management of information.
• Integration at the level of government systems. There is a dearth of research on the integration of health care at the level of government systems. This includes integration across the determinants of health (research on how action on the determinants of health contributes to improved health and health care); integration across the mandates of government departments (research on integration across departmental mandates for education, employment, housing and health care); and integration across governmental jurisdictions (e.g., research on international models of federal-state collaboration).
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2. Multidisciplinary research teams

Research on integrated health care requires multidisciplinary research teams that include complementary and alternative practitioners. Practitioners can provide an understanding of the experience of providing and receiving integrated health care (e.g., the synergy between massage and acupuncture). They can advise on how to maintain the integrity of care within the research process. (Research protocols can force practitioners to practice in an artificial way).

Once the infrastructure for such a multidisciplinary approach is established - through integrated clinical services, through collaboration between researchers and practitioners, and through research funding for studies on integrated care - the research projects that emerge are necessarily comprehensive in their approach to health care and the outcomes of health care.

3. Consumers' ownership of, access to, and control of research

Consumers need to be involved at all stages of the research process, including the design of the project, the implementation of the project, the analysis of the results and the dissemination of the results. This is true of all communities of people with HIV/AIDS, but was particularly emphasized with regard to research involving Aboriginal peoples and traditional Aboriginal healers and healing practices.

4. Consumers' decision-making processes

The process that the consumer follows in making decisions about health care (including complementary and alternative practices and services) involves more than health care providers: it involves peers, community organizations and other health intermediaries. People especially seek information about how to access services and about how effective the services will be.

5. Consumers' motivations for using CAHC (products, practices, and practitioners) or integrated health care.

CAHC meets a range of needs, many of which are broader than the clinical management of HIV infection. In this regard, 'efficacy' can be a problematic concept because it does not fit with the complex factors that make CAHC a good experience for users, or with the philosophy of the complementary and alternative approach to health and health care.

6. Intervention studies

Research has to move beyond utilization studies to intervention studies. People with HIV/AIDS want to know what works, not how many people are using a complementary and alternative product, practice or service, or what products, practices or services they are using.

7. Self care

Many people with HIV/AIDS use practices that do not need a practitioner. They do many things to manage their health - not all of which are conventionally considered 'health care.' Research into the full range of health care for people with HIV/AIDS must include practices that do not involve a practitioner.

Report to plenary

Overarching theme:
Integrative, culturally appropriate research that adopts the principles of ownership, access, and control to advance the continuum of health care practices and services, with a special focus on CAHC and NHPs.

Some guiding principles:

• an integrative, multidisciplinary approach to the research, one that itself grows out of an integrative team approach to health care
• ownership of, access to, and control of the research for the consumer, so that consumers are involved in the objectives, design and implementation of the research project and the analysis and dissemination of the research findings
  
• culturally-appropriate research

Some possible research projects:

• models of integrative care that work for people with HIV/AIDS
• consumers' needs and how CAHC can meet those needs
• consumers' decision-making processes and pathways
• models of integration: a) system-wide; b) clinical; c) jurisdictional (across determinants of health and across levels of government)

Priority #1:
Funding and capacity building of integrative research teams working on CAHC and NHPs with a focus on HIV/AIDS

Strategies:

• Build the concept of integrative research teams:
  • determine existing capacity for integrative research
  • establish principles of integrative research
  • set the goals and the short- and long-term objectives for integrative research
  • develop criteria and review the proposal process for research funding
  • develop a work plan
• Write a draft request for proposals for consideration by research funding agencies (if the agencies are supportive, the draft would form the basis for their own request for proposals).
• Identify possible demonstration projects, drawing on models of integrated care currently in practice (e.g., Tzu Chi Institute, Oak Tree Clinic, Nine Circles Community Health Centre, Sherbourne Health Centre, etc.).

Next steps:

• a core working group undertakes the preliminary development of the concept, builds support for the concept and plans a national meeting
• a national meeting to further build the concept and develop the draft request for proposals, involving:
  • clinics and centres with experience in integrative care and research (nationally and internationally)
  • consumers (people with HIV/AIDS, Aboriginal people)
  • other relevant networks (Canadian Collaborative HIV/AIDS Pharmacy Network; Canadian Association of Nurses in AIDS Care, Canadian Holistic Nurses Association, networks of researchers in CAHC and NHPs, etc.)
  • CAHC practitioners with experience in research or HIV/AIDS care
• seed funding for a core working group to follow up on the national meeting, prepare the draft request for proposals and build partnerships with research collaborators, industry, Health Canada and research funding agencies

Possible model:

One possible model to consider is the Institute for Work and Health. The institute is an independent, not-for-profit organization whose mission is to research and promote new ways to prevent workplace disability, improve treatment and optimize recovery and safe return-to-work. It has been providing evidence-based research and practical tools for clinicians, policy-makers, employees and managers since 1990. It began as a research program of the Workers' Compensation Board. It expanded to an institute with the support of three funders and is currently one of the leading research agencies on work and health in North America. For further information, see  www.iwh.on.ca.

Building Research Capacity

Synopsis of the topic

Building research capacity refers to efforts to increase the ability and readiness of individuals and organizations to identify, develop and conduct research on CAHC and NHPs. Some of the needs identified in recent consultations include:

• funding for training awards, research projects and research infrastructure for research in CAHC and NHPs
• mentors, role models and champions for research in CAHC and NHPs
• training in conducting research and using research findings for CAHC practitioners, educators, students and community members
  
• training and funding for CAHC practitioners to write up case reports
• networks of researchers and practitioners to develop and implement research agendas
• research funding panels with appropriate expertise to review CAHC and NHP research projects, including members from relevant communities
• research ethics boards with appropriate expertise to review CAHC and NHP research projects, including members from relevant communities

Participants in the roundtable especially underscored the importance of drawing in people from the relevant communities (e.g., people with HIV/AIDS, Aboriginal peoples) and consumers of CAHC and NHPs to participate in all stages of the research projects.

Areas for capacity building

1. Community participation in and control of research

Community ownership of, access to, and control of the research process is a core value for people with HIV/AIDS and Aboriginal people. To this end, capacity building is required in:

• developing community-based participatory research
• training community members in conducting research and using research findings
• networking between community organizations on research priorities, opportunities and initiatives

2. Training and engagement of potential researchers

Specific efforts are needed to find, train or engage people who could potentially conduct research on CAHC and NHPs. This would include:

• training in conducting research and using research findings for CAHC practitioners, educators, students and community members
• specific funding allocations to CAHC educational institutions for research capacity building
• building bridges between research communities and networks
• building research capacity in Aboriginal communities

3. Access to research funds

CAHC practitioners are at a disadvantage when applying for research funds. It would help to have peer review panels with appropriate expertise to review research projects on CAHC and NHPs, including members from the relevant communities. It may also be useful to look for funding for research from unexplored areas such as raw material suppliers of NHPs.

4. Review of research proposals

Research proposals should be reviewed as to both their scientific quality and their relevance to consumers. It is important to build the capacity for the peer review of consumer relevance as well as scientific quality, and to ensure that reviewers have the appropriate expertise to review research projects on CAHC and NHPs.

5. Sustainability of research over time

To sustain the development of knowledge over time, ongoing funding is required. One-time funding is a barrier to the sustained development and application of knowledge in a continuous learning process.

Report to plenary

Priority #1:

1. Training in conducting research and using research findings for CAHC practitioners, educators, students, and community members
2. Funding for CAHC practitioners to write up case reports
3. A focus on Aboriginal ownership of, access to, and control of the research process

Strategies:

• Use existing best practices in research training and development.
• Fund the development of multidisciplinary educational modules on research.
• Provide training in how to complete a research funding application.
• Pursue strategic funding initiatives with Canadian Institutes of Health Research and other partners (e.g., the Canadian Foundation for AIDS Research, suppliers of raw materials of NHPs, etc.).
• Undertake a needs assessment with Aboriginal communities to identify how they wish to move forward in building research capacity (e.g., consult with the National Aboriginal Council on HIV/AIDS).
• Consider how the Canadian Aboriginal AIDS Network's Aboriginal Capacity-Building Program in Community-Based Research could build capacity in research (e.g., through the Summer Training Awards).
• Support community participation in laboratory research and population-based participatory research.

Priority #2:
Leveling the playing field to gain equal access to research funds

Strategies:

• Approach suppliers of raw materials for NHPs, as well as other funders, for research funding.
• Build from where there is currently strength in research on CAHC and NHPs.
• Develop a solid training and mentorship program in research on CAHC and NHPs.
• Examine the reasons for the poor credibility of CAHC and NHPs and undertake research in these identified areas.
• Identify and communicate the high utilization rate of CAHC and NHPs through high-quality research and publications.
• Increase the recognition of research on CAHC and NHPs through publications, presentations, conferences, etc.
• Work with the organizers of the XVI International AIDS Conference (to be held in Toronto in 2006) to get a track devoted to CAHC and NHPs:
  • The Canadian Treatment Action Council will conduct an analysis of the forthcoming XIV International AIDS Conference (to be held in Barcelona in July 2002) to identify coverage of research on CAHC and NHPs.
• Work with the Canadian Association for HIV Research to get time at its annual conference and recognition for research on CAHC and NHPs.

Priority #3:
Funding for training awards, research projects and research infrastructure in CAHC and NHP research

Strategies:

• Help potential applicants learn about and apply for available funds by:
  • publicizing timely information about opportunities through networks (networking is key)
  • maintaining a web-based database of current funding opportunities
  • creating partnerships among researchers and with funding agencies
• Provide training in how to write a research funding application.
• Provide resources for research offices and other research development programs in educational institutions for CAHC practitioners to inform potential researchers of funding opportunities and to help them navigate the funding application process.
• Nurture a research culture in educational institutions for CAHC practitioners.
• Continuously seek new research funding opportunities.

Methodological Development

Synopsis of the topic

Researchers in CAHC and NHPs have emphasized the need to use or to develop research methodologies that are appropriate to the therapy under investigation. This can be challenging. For example, what research methods are appropriate when studying practices based on the mind-body dynamic? What research methods are appropriate when dealing with non-standardized therapies (e.g., individualized treatment regimens, incremental dosing of products, use of non-standard products or unique product preparations)?

While randomized controlled clinical trials may be used or modified in some circumstances, other research methods - such as individual case reports, case series, case-control studies, etc.- may be needed in other circumstances. For instance, randomized controlled clinical trials can be used for many types of research on NHPs, but are not suited to research on NHPs in their cultural context (such as research on individual preparations used in Traditional Chinese Medicine).

Researchers are asking for meetings and mechanisms by which they can address methodological issues and build bridges between different methodological schools. Among the issues to be addressed are types of evidence (What counts as evidence? What evidence is appropriate?) and measures of outcomes (What is being measured? Is the measure appropriate?).

HIV/AIDS-specific methodological challenges

HIV/AIDS, as well as the treatments used to manage it, presents a number of specific methodological challenges, in addition to the more general challenges encountered in research on CAHC and NHPs:

• HIV/AIDS is not a single disease, but a syndrome that involves multiple diseases.
• The syndrome varies from individual to individual.
• The syndrome involves both immunological and virological dynamics.
• The treatment for HIV consists of multiple drugs (antiretroviral drugs, prophylactic treatments for opportunistic infections, treatment for opportunistic infections, drugs to manage side effects) in multiple combinations (there is no standard protocol that every individual follows).
• It is difficult to determine whether an effect is due to an intervention or to the HIV.
• One cannot generalize the results of studies of pharmacologic effects of benefits, harms and interactions of NHPs or CAHC in healthy individuals to benefits, harms and interactions in people with HIV/AIDS.
• Given a life-threatening disease and a standard of care that has been shown to reduce mortality and morbidity, research that departs from the standard of care would require substantial ethical justification.
• People with HIV/AIDS may be reluctant to participate in studies that require them to go to HIV clinics or other institutions that are publicly identified with HIV care because of concerns with the consequences of disclosure of their HIV status (e.g., stigma in the community or at work, loss of housing, refusal of insurance, etc.).

Areas for methodological development

1. Transcultural translation of CAHC - an area for research

Research on CAHC needs to be informed by a complete understanding of the paradigm of health and health care of the modality under investigation. This requires transcultural translation of the paradigm and its constituent concepts, diagnostics and practices. This should be an area of research in and of itself, as well as a necessary preamble to research on the effects of CAHC.

2. Challenges presented by some forms of CAHC

Participants identified aspects of CAHC and use of NHPs that present methodological challenges for researchers. These include situations where a variety of CAHC modalities are used simultaneously to treat an individual or where NHPs are used in an individualized, culturally-specific context (such as in Traditional Chinese Medicine). One suggested approach would be to conduct comparative outcome studies in which two groups receive a complex of treatments based on the practitioners' judgement.

3. Issues related to the use of randomized controlled clinical trials

A number of issues should be addressed with regard to the use of randomized controlled clinical trials. One is the potential for selection bias when study participants include or consist of past users of CAHC or NHPs. Another is the potential for contamination when a product is available for purchase (often in many different formulations) outside of the study.

4. Assumptions about research methods for CAHC and NHPs

It is frequently assumed that research in CAHC and NHPs requires different methods than research in conventional health care. This assumption should be examined. The research methods to be used should be appropriate to the claim being made and to the evidence required to make that claim. For example, some types of claims for NHPs would require the evidence of a randomized controlled clinical trial; other types of claims would require other forms of evidence.

5. Measuring a complex set of effects

It is important to recognize the complexity of what can or should be measured in research on CAHC and NHPs. The effects that need to be measured include not only pharmacologic and pathologic endpoints, but also psycho-social outcomes such as quality of life, as well as psycho-neural interactions such as immune responses resulting for the care process. For some of these effects, there are established methods (such as quality of life scales) but for other effects (such as mind-body dynamics), there are no established methods.

6. Ethical challenges associated with research on CAHC and NHPs

The ethical challenges associated with research on CAHC and NHPs may be more perceived than real (e.g., the perception that an NHP is the equivalent of a placebo in a randomized controlled clinical trial). Nevertheless, these challenges - perceived as well as real - must be addressed by educating research ethics boards about CAHC and NHP research, and by educating CAHC and NHP researchers about research ethics.

7. Collaborative and participatory research methods

Collaborative and participatory research can require adjustments from researchers, their sponsoring institutions, funding agencies, funding review panels and research ethics boards. Challenges encountered in the development of the Community-Based Research Program of the Canadian Strategy on HIV/AIDS can provide some insight into the work that is required in this regard.

Report to plenary

Priority #1:
Establish standards of evidence and research

The first priority is to establish standards of evidence and research. These standards should address the question of what standard of evidence is required when making a certain claim or investigating a particular effect (e.g., for a claim regarding an NHP, for treatment involving multiple modalities, for self-reported health outcomes, etc.), and what research methods are appropriate when gathering the required evidence. These standards of evidence and research methods can be used in educating practitioners, researchers, funding review panels and research ethics boards about CAHC and NHP research.

Strategies:

• Build on existing work, such as the work of the National Center for Complementary and Alternative Medicine in the United States
  ( http://nccam.nih.gov/training/centers/index.htm#1 and
   http://nccam.nih.gov/research).
• Suggest to the organizers of the forthcoming workshop on research methods in CAHC and NHPs (scheduled for the autumn of 2002) that one goal or outcome of the workshop be to develop standards of evidence and research in CAHC and NHPs.

Priority #2:
Education and training in standards of evidence and research for CAHC practitioners and educators and for conventional practitioners and researchers

Strategies:

• Develop a series of learning modules on research in CAHC and NHPs (as proposed by the August 2001 roundtable on research literacy and capacity).
• Develop and implement research training support programs for faculty in CAHC educational institutions (as proposed by the August 2001 roundtable on research literacy and capacity).

Priority #3:
Foster research skills in CAHC and NHPs among practitioners and researchers

Strategies:

• Support research teams of conventional and complementary/alternative researchers (train both established and new researchers in CAHC and NHP research through the process of doing research).
• Work with the Canadian Association for HIV Research to educate its members about CAHC and NHP research through, for example, satellite meetings at its annual conference.
• Promote accredited continuing education events on CAHC and NHPs and related research for health care providers.

Priority #4:
Educate funding review panels and research ethics boards about CAHC and NHP research, methods and standards of evidence

Strategy:

• Recognition of different research methods and of the equal contribution of all collaborators (regardless of their order as authors of publications) is essential if integrative research teams are to receive funding.

Research Dissemination and Uptake

Synopsis of the topic

Consumers of CAHC and NHPs are looking for reliable, accessible and easy-to-understand information about CAHC and NHPs. Health intermediaries and information providers can help consumers in this regard, by evaluating and selecting information, by presenting information in ways that will be accessible to consumers and by increasing the skills of practitioners and consumers in working with information about CAHC and NHPs.

Suggested ways to facilitate the dissemination and uptake of research have included:

• systematic reviews of research
• development of standardized concepts and terminology across CAHC modalities
• directories and networks that facilitate access to experts
• plain-language, culturally-sensitive resources in all required languages
  
• training for health intermediaries in understanding and evaluating research findings (critical appraisal skills, knowledge of research methods, knowledge of statistics, knowledge of the therapy under consideration)
• use of informal information networks, such as peers, families and friends, community networks, gay men's health centres, etc., to disseminate information
• use of popular print media and the Internet
• education of conventional practitioners about CAHC and NHPs
• education of CAHC practitioners about conventional health care and health research

It is important to note that health care providers are not the primary sources of information about CAHC and NHPs for people with HIV/AIDS. Rather, their primary sources of information include knowledgeable individuals; HIV/AIDS information providers (such as the Canadian AIDS Treatment Information Exchange and Project Inform); national, regional and local HIV/AIDS organizations; conferences and meetings; and the popular media.

There are concerns about equity of access to information about CAHC and NHPs among certain vulnerable groups (e.g., street youth, injection drug users) and people in rural areas.

Areas of development

1. Types of resources that could facilitate dissemination and uptake of information about CAHC and NHPs:

• guidelines for consumers about interpreting information about CAHC and NHPs
• alternative formats of information for people who do not access main sources of information such as the Internet (focus groups can be used to determine the required formats)
• a list of CAHC practitioners and researchers who are working in HIV/AIDS
• a structured format to help academic researchers share the results of research in community fora in language that consumers understand (this could be built into the funding agreement for research projects, with funding set aside for communication at community fora)
• monographs on NHPs

2. Channels of information that can be used to reach people with HIV/AIDS with information about CAHC and NHPs:

• existing channels of communication with people with HIV/AIDS, such as:
  • the Canadian AIDS Treatment Information Exchange
  • community organizations (e.g., the AIDS Committee of Toronto maintains a directory of CAHC practitioners)
• provincial and national health organizations
• the Canadian HIV/AIDS Clearinghouse
• people selling NHPs (pharmacists, health food store staff)
• the health care delivery system, including physicians, public health workers, pharmacists, poison control agencies, etc.

3. Strategies to increase recognition of research on CAHC and NHPs:

• publication of the results of research on CAHC and NHPs in mainstream medical and scientific journals
• presentations or satellite meetings on CAHC and NHPs at the annual conference of the Canadian Association for HIV Research and the XVI International AIDS Conference (to be held in Toronto in 2006)
• systematic reviews of CAHC and NHP research studies (supported by a request for proposals or other forms of funding)
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4. Gaps in access to information

There are people with HIV/AIDS who do not access information through community-based organizations, through HIV/AIDS conferences or through other commonly used sources of information. It is important to determine how these people access information and to target information strategies accordingly. This may involve evaluation studies of current or future information dissemination programs.

Report to plenary

Key groups to consider

The following groups should be included in strategies and programs to improve dissemination and uptake of information about CAHC and NHPs:

• consumers and consumers' organizations
• conventional and complementary/alternative practitioners
• educators and researchers
• government agencies: federal and provincial/territorial ministries of health; public health agencies; First Nations and Inuit Health Branch, Health Canada

Priority #1:
Reviews of research on CAHC and NHPs

Strategies:

• Fund systematic reviews of research studies on CAHC and NHPs.
• Prepare guidelines for reviewers to ensure consistency of systematic reviews.
• Build networks of people with the required skills to conduct systematic reviews.
• Simplify the language of reviews so that everyone - reviewers and consumers - use the same language.
• Use the Internet as a clearinghouse for systematic reviews:
  • Canadian Health Network ( www.canadian-health-network.ca)
  • CAMline ( http://camline.org)
  • Canadian Aboriginal AIDS Network LinkUp Connexion ( www.caan.ca)
• Link with other review networks, such as:
  • the Cochrane Collaboration (for resources on complementary and alternative therapies see }
    http://www.informedhealthonline.org/item.aspx?topic=1208 and
    http://www.informedhealthonline.org/item.aspx?tabid=29)
  • the University of Exeter Complementary Health Studies Program (see
     www.ex.ac.uk/chs)

Priority #2:
Assessment of information needs of target audiences (see list of key groups above)

Strategies:

• Conduct focus groups with target audiences to determine:
  • means to ensure equity of access to information
  • formats for information dissemination
  • language requirements (level of literacy, languages used, etc.)
  • cultural appropriateness of information
  • nature of information needed
• Use questionnaires and other needs assessment methods to determine the above.

Priority #3:
Dissemination and uptake strategies

Strategies:

• Tap into existing organizations and systems, and use them as conduits of information:
  • CAMline
  • Canadian Aboriginal AIDS Network LinkUp Connexion
  • HIV/AIDS treatment information providers
  • community fora
  • professional organizations
  • HIV/AIDS conferences (community conferences, research conferences, health provider conferences)
• Integrate information dissemination about CAHC and NHPs into health services delivery.
• Create directories of CAHC providers, CAHC and NHP researchers, and CAHC and NHP educational institutions.
• Develop networks of CAHC providers, and CAHC and NHP researchers.
• Develop monographs on NHPs.
• Develop templates or guidelines for interpreting research findings and information about CAHC and NHPs.
• Support knowledge transfer workers.

Building and Strengthening Liaisons

Synopsis of the topic

Efforts to promote research on CAHC and NHPs are gathering momentum in Canada. What are some specific ways to build or strengthen liaisons between the HIV/AIDS field and the broader CAHC and NHPs field?

Participants identified the sectors in which awareness of and involvement in CAHC and NHP research need to be strengthened - researchers, funders, community organizations, hospitals and clinics, practitioners, professional associations, educational institutions, information providers and the media - and discussed ways to do this.

Areas of development

1. Researchers

The following ways were suggested to encourage researchers to become involved in research on CAHC and NHPs:

• Identify leaders in relevant organizations, such as the Canadian Association for HIV Research and the Canadian Association of Nurses in AIDS Care.
• Sponsor workshops or satellite meetings at the annual conferences of these organizations.
• Provide funds for a dedicated staff person to build liaisons and to develop ideas emerging from the workshops or satellite meetings.
• Provide funds for researchers as an incentive to them to develop new partnerships or to undertake a new line of research.
• Develop a mentorship program for new researchers to support them in applying for training funds or project funds in CAHC and NHP research.

2. Funders

Potential funders include the federal research granting agencies (Canadian Institutes of Health Research, the Natural Sciences and Engineering Council of Canada, the Social Sciences and Humanities Research Council of Canada), banks, insurance companies, industry and foundations:

• The NHPs industry should be encouraged to direct their research into the role of NHPs in HIV care.
• Manufacturers of HIV antiretroviral drugs are interested in the use of NHPs to mitigate side effects associated with their drugs and may be persuaded to support clinical trials on selected interactions.
• Foundations that may provide funds include the Trillium Foundation, the Toronto Wellesley Hospital, the Michael Smith Foundation for Health Research, the Buddhist Compassion Relief Tzu Chi Foundation and the Canadian Foundation for AIDS Research.
• Insurance companies have an interest in promoting wellness and may be persuaded to support CAHC and NHP research to this end.

It is important to have a well-developed project before approaching a funder. One suggestion was to run a competition for concept proposals for funding applications, and then to award seed money to the successful applicants for the development of a full funding application.

When funding clinical services, it may be possible to require an evaluation of the services. This would provide funding for research on the evaluation of clinical services, including the integration of services.

3. Community organizations

Community organizations working in HIV/AIDS are developing their capacity for research. For example, the AIDS Committee of Toronto has dedicated research and evaluation staff. Similarly, the Canadian Aboriginal AIDS Network has a dedicated staff person for research, and recently awarded one of the Summer Training Awards - which it administers under the Aboriginal Community-Based Research Program - to a person studying Aboriginal health practices in Labrador and Quebec.

There are potential resources to support community-based research. The Community-Based Research Program of the Canadian Strategy on HIV/AIDS funds technical support staff in research for community organizations. It is possible that these resources could be applied to research on CAHC and NHPs.

Ongoing funding is key to building capacity in community organizations. Jurisdictional barriers can disrupt funding. For example, the British Columbia Persons With AIDS Society lost provincial funding for its work on CAHC and NHPs because research was deemed to be an area of federal responsibility. As a result, a promising capacity for research on CAHC and NHPs was stalled.

Community organizations are key to recruitment into and participation in research, as well as to knowledge transfer between community members and researchers. One way to move forward in CAHC and NHP research is to facilitate communication between community organizations about their research activities in this field and related knowledge transfer activities. Another way is to fund training for research staff of community organizations in publishing in peer-reviewed journals and in interpreting evidence presented in these journals.

4. Hospitals and clinics

There are a number of hospitals and clinics in Canada that could possibly become a site for research on CAHC and NHPs and HIV/AIDS:

• Oak Tree Clinic, Vancouver, serving primarily women and children with HIV/AIDS and their families
• St. Paul's Hospital, Vancouver, the home of the British Columbia Centre for Excellence in HIV/AIDS and the national offices of the Canadian HIV Trials Network
• Tzu Chi Institute for Complementary and Alternative Medicine, Vancouver
• Nine Circles Community Health Centre, Winnipeg, which provides integrated, client-centred primary health care, including traditional Aboriginal healing
• St. Michael's Hospital, Toronto, which provides HIV care, provides $5 million for research, and has developed a protocol for CAHC
• Sherbourne Health Centre, Toronto, which provides HIV care, including CAHC
• Mt. Sinai Hospital, Toronto, which provides selected CAHC, including art therapy and Traditional Chinese Medicine
• Hospital for Sick Children, Toronto, which provides HIV care and is involved in research on CAHC and NHPs
• Toronto Western Hospital, the home of the Artist's Health Centre

However, there are relatively few clinics in which conventional and complementary/alternative health care are fully integrated. This is a barrier to research on the integration of care.

5. Practitioners

There are relatively few complementary/alternative practitioners who specialize in HIV/AIDS. Those who do are very busy.

The approach of conventional practitioners can overlap with that of complementary/alternative practitioners. It may be possible to work with such practitioners to advance research on CAHC and NHPs. Suggestions as to how to do this include:

• Work with sections of professional associations that focus on CAHC and NHPs.
• Work with professional associations that bridge conventional and complementary/alternative health care, such as the Canadian Complementary Medical Association, the Association of Complementary Physicians of British Columbia and the Ontario Society of Physicians for Complementary Medicine.
• Sponsor continuing education accreditation for educational events about research on CAHC and NHPs.

There is an opportunity to gather more information about the use of CAHC and NHPs through HIV/AIDS observational databases. In Ontario, the HIV Information Infrastructure Project (the successor to the HIV Ontario Observational Database) is about to begin gathering comprehensive data on the health care of people with HIV/AIDS in Ontario (see  http://www.ohtn.on.ca/index_hiip.html). There have been discussions about including some information about CAHC in the database. However, time is of the essence, as the software for the database is in the final stages of preparation and installation.

6. Professional associations

Professional associations - both conventional and complementary / alternative - can be helpful in developing research infrastructure and obtaining research funds. They can facilitate communication and networking through their mailing lists, sections and conferences. They can promote education and awareness about CAHC and NHPs, as well as about research in these fields, at their annual conferences and in their continuing education programs. They can provide credibility and support for funding applications for research projects.

7. Educational institutions

In general, participants observed that there is a need for:

• resources for research offices in CAHC educational institutions
• curriculum and faculty development on CAHC and NHPs in educational institutions for conventional health care providers
• curriculum and faculty development on research in educational institutions for CAHC providers

There are a number of initiatives underway to expand research capacity in CAHC and NHPs in Canada:

• Through a Health Canada contract, the Tzu Chi Institute for Complementary and Alternative Medicine is undertaking a survey of three CAHC educational bodies (for chiropractors, massage therapists and naturopaths) as a follow-up to the roundtable on research literacy and capacity convened by Health Canada in August 2001.
• The University of Calgary, in conjunction with Health Canada and a national advisory group, is undertaking a review of NHPs and CAHC in undergraduate medical school curriculum, with a view to identifying effective teaching approaches, curriculum placement and national guidelines for incorporating the necessary level of attention to this area for graduating doctors.

There may also be opportunities to include education about CAHC and NHPs in training programs in HIV care:

• Department of Family Medicine, McMaster University, third-year residency in HIV care, being developed under the direction of Dr. Dale Guenter
• School of Nursing, University of British Columbia, course on HIV Prevention and Care
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Report to Plenary

Priority #1:
Time, resources and institutional support to work specifically on building partnerships and promoting research on integrative health care.

The group reported on the areas for development summarized above. The group then emphasized the importance of having dedicated staff to work specifically on building partnerships and on promoting research on integrative health care. This work requires time, resources and institutional support. There are a number of possible models:

• a Centre of Excellence in integrative health care
• a research network on integrative health care
• research staff in community organizations
• an office of CAHC and NHP research in Canadian Institutes of Health Research.

Final Recommendation

To develop research on CAHC and NHPs in the field of HIV/AIDS, it is necessary to have the resources and time to build partnerships, explore opportunities and increase the profile of CAHC and NHPs in existing HIV/AIDS networks and programs.

There was overwhelming consensus that funding for a dedicated staff person is necessary to undertake activities to build research on CAHC and NHPs in the field of HIV/AIDS. The following activities were identified but were not prioritized:

• Build on existing HIV/AIDS observational databases (British Columbia Centre for Excellence in HIV/AIDS, the HIV Information Infrastructure Project) to gather information about the use of CAHC and NHPs among people with HIV/AIDS in relation to conventional health care and treatments.
• Identify and build relations with partners in research on CAHC and NHPs:
  • funders, such as the Canadian Foundation for AIDS Research
  • industry, such as suppliers of raw materials of NHPs and pharmaceutical companies interested in the role of NHPs in relation to antiretroviral therapies
  • HIV/AIDS researchers and practitioners who are open to work on CAHC and NHPs
• Increase awareness in the HIV/AIDS field of research on CAHC and NHPs:
  • at the annual conferences of the Canadian Association of HIV Research, through presentations and satellite meetings
  • at the XVI International AIDS Conference to be held in Toronto in 2006, through a separate track or presentations across the tracks
• Disseminate information through existing HIV/AIDS networks about research opportunities, and share information about research initiatives in CAHC and NHPs.
• Liaise with broader networks and evolving initiatives in CAHC and NHPs, such as:
  • the follow-up to the research priority-setting conference on drug interactions with NHPs
  • the forthcoming workshop on methodological issues related to research on CAHC and NHPs
  • the initiative to develop curriculum for undergraduate medical education on CAHC and NHPs
  • initiatives to improve the dissemination and uptake of information about CAHC and NHPs
• Facilitate the development of an integrative research team on integrative health care by:
  • liaising with health centres that provide integrative health care to people with HIV/AIDS
  • establishing a working group to identify research opportunities in integrative health care
  • developing a draft request for proposals
  • liaising with Canadian Institutes of Health Research and other funders to explore funding opportunities for research on integrative health care
• Facilitate the development of research on Aboriginal healing practices in relation to HIV/AIDS, in consultation with:
  • the Canadian Aboriginal AIDS Network
  • the First Nations and Inuit Health Branch, Health Canada
  • the Institute of Aboriginal Peoples' Health, Canadian Institutes of Health Research

References

Braitstein et al. 2000. Information seeking and health care utilization patterns among people living with HIV/AIDS who currently use both antiretrovirals and complementary therapies in British Columbia. Ninth Annual Canadian Conference on HIV/AIDS Research, Abstract 340P. Canadian Journal of Infectious Diseases 11 (Suppl. B).

Cain R, Pawluch D, Gillett J. 1999. Practitioner Perspectives on Complementary Therapy Use Among People Living with HIV. Ottawa: Health Canada

Crouch R, Elliott R, Lemmens T, Charland L. 2001. Complementary / Alternative Health Care and HIV/AIDS: Legal, Ethical & Policy Issues in Regulation. Montreal: Canadian HIV/AIDS Legal Network.

Furler M et al. 2000a. Patient reported complementary and alternative medicine (CAM) use -- An interim assessment of drug utilization patterns for patients attending Ontario HIV outpatient clinics. Ninth Annual Canadian Conference on HIV/AIDS Research, Abstract 340P. Canadian Journal of Infectious Diseases 11 (Suppl. B).

Furler M et al. 2000b. Gender differences in the drug utilization patterns of HIV infected outpatients: an interim analysis. Ontario HIV Treatment Network Research Day, 27 November 2000, Toronto, Ontario (proceedings available online via www.ohtn.on.ca).

Furler M et al. 2001. Physician awareness of complementary and alternative medicine use. Tenth Annual Canadian Conference on HIV/AIDS Research, Abstract 363P. Canadian Journal of Infectious Diseases 12 (Suppl. B).

Heath KV, Gatarick N, Yip B et al. 1999. Complementary therapy use in a province-wide HIV/AIDS drug treatment programme. Eighth Annual Canadian Conference on HIV/AIDS Research, Abstract C335. Canadian Journal of Infectious Diseases 10 (Suppl.).

Kamyab M, Gibson S, Ridsdate V, Ansell C, Williams K. 2001. Changes in use of complementary and alternative therapy (CAT) among HIV+ patients in Saskatchewan. Tenth Annual Canadian Conference on HIV/AIDS Research, Abstract 292P. Canadian Journal of Infectious Diseases 12 (Suppl. B).

Kendall TR, Braitstein P, Chan K, Waselnuk G, Montaner JG, O'Shaughnessy MV, Hogg RS. 2000. Mind and body: sociodemographic and clinical characteristics of HIV+ individuals using meditation as a complementary therapy while on antiretrovirals in British Columbia, Canada. Ninth Annual Canadian Conference on HIV/AIDS Research, Abstract 233P. Canadian Journal of Infectious Diseases 11 (Suppl. B).

Kendall T. 2001. Optimal Environments for Integrated Care: Complementary and Alternative Medicine in HIV Management in British Columbia. Vancouver: British Columbia Persons With AIDS Society.

MacDonald CA, Blair S, MacDonald D, Ryan B, Bowmer I, Bognar C, Mills B. 2000. National HIV/AIDS Treatment Information Environmental Scan: Final Report.

McAmmond D. 2000. "Facilitating the Integration of Complementary Therapies into HIV Care and Treatment: Current Status and Ideas for Action." Draft.

Millson P, McMurchy D, Leeb K. 1999. Complementary Therapies: A HOOD Report on the Cost of HIV in Ontario. HIV Health Evaluation Update.

Robinson G, Millson P, Leeb K, Luby K, Rachlis A. 1998. Use of complementary therapies (Cts) by PHA enrolled in the HIV Ontario Observational Database (HOOD). Seventh Annual Canadian Conference on HIV/AIDS Research, Abstract 434P. Canadian Journal of Infectious Diseases 9 (Suppl A).

Health Hounds. 2001. Toward Integrative Care - Final Report from a National Strategic Planning Meeting on Complementary Therapies and HIV/AIDS. Montreal, January 12-13, 2001.

Waring V, Tseng A, Salit I. Complementary therapy (CT): changes in patterns of use among HIV clinic patients. Seventh Annual Canadian Conference on HIV/AIDS Research, Abstract 39P. Canadian Journal of Infectious Diseases 9 (Suppl A).

Appendix A: List of Participants

Jose Berger
Bastyr University
Kenmore, WA (USA)

Irma Boyle
Health Canada
Ottawa, ON

Paula Braitstein
BC People With AIDS (BCPWA)
Vancouver, BC

Stewart Brown
EHN Inc.
Toronto, ON

Roy Cain
McMaster University
Hamilton, ON

Brian Foster
Health Canada
Ottawa, ON

Keith Gallicano
Chromedica Prime, Vancouver General Hospital,
Axelson Biopharma Research
Burnaby, BC

Warren D. Hill
BC Centre for Disease Control
Vancouver, BC

Aaron Christopher Hoo
Vancouver, BC

Sean Hosein
Canadian AIDS Treatment Information Exchange (CATIE)
Toronto, ON

Randy Jackson
Canadian Aboriginal AIDS Network (CAAN)
Ottawa, ON

Debbie Kopansky-Giles
Canadian Memorial Chiropractic College
Toronto, ON

William Lau
The Ontario HIV Treatment Network
Toronto, ON

Glenda Meneilly
Oak Tree Clinic Women & Children's Health Centre of BC
Vancouver, BC

Darlene Ramsum
Tzu Chi Institute for Complementary and Alternative Medicine
Vancouver, BC

Ron Rosenes
Canadian Treatment Action Council (CTAC)
Toronto, ON

Joan Simpson
Health Canada
Ottawa, ON

Michael J Smith
Health Canada
Ottawa, ON

Michael R Smith
Health Canada
Ottawa, ON

Kimberly Walker
Community Research Initiative Toronto (CRIT)
Toronto, ON

Facilitator and rapporteur:
Theo de Bruyn
Ottawa, ON

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1 Heath et al. 1999; Braitstein et al. 2000; Kendall et al. 2000; Kendall 2001.

2 Waring et al. 1998; Robinson et al. 1998; Millson et al. 1999; Furler et al. 2000a; Furler et al. 2000b; Furler et al. 2001.

3 Kamyab et al. 2001.

4 Cain et al. 1999; McAmmond 2000; MacDonald et al. 2000; Health Hounds 2001; Crouch et al. 2001.