Institute of Infection and Immunity (III)
Partnership Forum Report
CIHR-III working to build partnerships in infection and immunity
Executive Summary
Introduction
Similarities and Differences
Partnerships that Work
Partnership Opportunities
Capacity Building
Healthy Public Policy
Knowledge Transfer
New Technologies
Public and Political Awareness, Education and Support
Unique Resources
A Partner-based Research Network in Infection and Immunity
Next Steps
Closing Remarks
Appendix: Participants
Mr. A. Les McDonald, Executive Director of the Canadian Network for Asthma Care, and Dr. Bryce Larke, Yukon Medical Health Officer, take part in a breakout session with members of Canada's volunteer organizations and professional societies working in the areas of infection and immunity at the CIHR Institute of Infection and Immunity Partnership Forum Jan. 31-Feb. 1, 2003, in Toronto, Ont.
Executive Summary
The Partnership Forum explored the development of a partner-based research network among associations and organizations investigating the areas of infection and immunity. Forty-two representatives of non-governmental organizations, health charities, professional societies and CIHR-III met with the objectives of enhancing interactions between CIHR-III and potential partners, and among partners; exploring opportunities for future collaboration; and sharing information on current partnerships focused on research and knowledge translation in relation to infection and immunity. Participation was on a "without prejudice" basis, with no requirement to commit to partnerships.
Sonya Corkum, CIHR Vice President, Partnerships and Knowledge Translation, welcomed participants to the consultation. She emphasized that partnerships are key to implementing the CIHR mandate. Dr. Tony Jevnikar, President, Canadian Society of Transplantation (CST), commented on the rich diversity of participants in terms of background, expertise and experience in partnering. He observed that this diversity represented both an opportunity and a challenge for participants in exploring how they might work together to maximize resources. Dr. Bhagirath Singh, Scientific Director, CIHR-III, stressed the importance of this Forum to the process of bringing the infection and immunity communities together, noting that the goal of this meeting was not to define priorities or do strategic planning, but to establish communications between CIHR-III and other organizations and associations that will help build and strengthen partnerships.
Similarities and Differences
To establish a common base for the Forum, participants first identified their similarities and differences. The participants found that, as well as seeing themselves as partners with CIHR-III, they share a common interest in diseases related to infection and immunity and a goal to improve quality of life through limiting the impact of these diseases on the health of Canadians. They also believe in the importance of the need for peer-reviewed health research. Shared challenges include frustration related to insufficient research funding, and feeling orphaned and under-represented in CIHR discussions. The participants ultimately felt that although they were all fighting specific diseases/syndromes, they were not doing this in a coordinated manner.
Research and Organizational Approaches
Approaches to research can vary significantly among basic scientists and clinicians; furthermore, many different approaches to research, such as quantitative, qualitative, community-based, narrative, or biomedical, are used in a wide variety of situations. Organizations differ in size, influence, goals, mission, stakeholders and administrative structures, and some organizations may focus on different CIHR pillars than others. Some organizations are more involved in communication and advocacy related to their disease area than in research.
Partnerships that Work
Forum participants felt that successful partnerships
- build trust by being realistic and respecting the perspectives and opinions of others, including those who are not at the table and may be affected by decisions
- develop partnership parameters up front by clarifying the commitment, contributions, limitations and expectations of each party to work toward achieving mutual outcomes and recognizing that although the organizational goals of partners don't need to be the same, the partnership outcomes do
- enable collaboration and sharing of information, expertise, data, resources and ideas that will benefit all involved while respecting issues such as territory and turf
- foster potential growth for all parties
- build commitment and passion, recognizing that motivation emerges from shared needs and commitments
- focus on innovation to develop new ways to solve problems and exploit opportunities in research remember that people make relationships work, not organizations, and therefore foster good interpersonal relationships, respect and understanding
- develop and support a common vision for the partnership, thereby ensuring that projects are completed and evaluated
Partnership Opportunities
Participants developed options for partnership opportunities in the area of infection and immunity. For the purposes of this consultation, an opportunity area was described as contributing to the fields of infection and immunity, addressing current issues related to these fields, crossing at least two CIHR pillars (themes), multi-disciplinary, and national in scope. Generated options were discussed and the following (alphabetical order) priorities were identified for future action:
- Capacity Building, focusing on clinician researchers and teams, facilitation of early mentoring, funding and resources
- Healthy Public Policy, focusing on a health research policy environment in Canada within governments, and/or between levels and layers of government
- Knowledge Transfer, focusing on users and researchers working together in both process and content to optimize the transfer of research to users and develop a mechanism for evaluation
- New Technologies, focusing on ethics and accountability in the development of new technologies and methodologies
- Public and Political Awareness, Education, and Support, focusing on raising public awareness in support of research on infection and immunity and encouraging government to champion research and science
- Unique Resources, focusing on ways and means to discuss with all interested parties the development of Canadian clinical databases, registries and tissue banks
Participants self-selected into small working groups to describe these areas further and suggest related actions. The participants felt that the network shouldn't limit itself to these six opportunity areas if there are more that can be addressed or that emerge as important in the future. If working groups are created based on recommended opportunity areas, it will be important to clarify their roles so that they don't overlap with the III Advisory Board. Furthermore, management of the opportunity areas depends on the responses to the post-consultation questionnaire (see Next Steps).
A Partner-based Research Network for Infection and Immunity
The purpose of this Forum was to serve as a starting point for the development of new collaborations in the areas of infection and immunity research. After participants explored opportunity areas of mutual interest, the discussion moved towards ways to work together in those areas. Participants investigated the possibility of instituting a research network by describing a few examples that are currently in place, such as the National Centres of Excellence, the Canadian HIV Trials Network, the Canadian Aboriginal AIDS Network, the Clinical Trials Network, and the Canadian Network for Asthma Control.
Structural Considerations
Following this discussion about possible approaches, participants worked in small groups to consider possible structures for an infection and immunity-based partnership network. Following are key points or "best advice" provided during presentations of small group work.
- Given the preliminary nature of the partnership, "network" may be an inappropriate term. "Coalition" is another option.
- Develop the network as a communication vehicle at the highest level so that it can support smaller working groups based on the opportunity areas. Most initiatives could be taken on by smaller "lead" organizations, depending on feasibility. The network function would be to support and advocate for partners at a broad level, since addressing specific disease issues as an entire group is impractical.
- Follow the guiding principles and key characteristics developed at this Forum to create the network, e.g., ensure that the network has a shared mission, vision, goals, terms of reference and infrastructure.
- Some formalized way of doing business is required; the network should be a group that has well-defined objectives and meets regularly.
- Consider the entire spectrum of formality in terms of structure. Do we want a very loose structure where individuals and organizations can come and go as they please or a more formalized approach involving written commitments?
- Health charities want to stay engaged so that they can make a well informed decision about future partnership commitments such as peer review.
- Create a flexible structure that takes into consideration differing levels of resources available in potential partner organizations. Given the many different possible types of partnerships, organizations could be encouraged to explore limited partnerships within the larger network.
- Organize the network to minimize a potentially excessive administrative burden on organizations, e.g., excessive email traffic.
- Information about the new privacy legislation is one example of the role CIHR-III could play in keeping various groups aware of the current situation and developments that affect them.
Role of CIHR-III
CIHR-III's role is to facilitate and enable a partnership network, not to direct it. The Institute will use the responses from the post-Forum questionnaire to guide it in defining the III role and resources to be allocated to such a network (see Next Steps).
Next Steps
- A briefing note will be prepared and distributed electronically to participants for use as a communications piece within their organizations. (completed)
- A draft Forum report will be forwarded to the Organizing Committee for comment, after which it will be finalized and distributed to participants. (completed)
- A questionnaire for post-consultation follow-up will be circulated with the final Forum report. Organizations will be requested to respond by March 14, 2003, after which their responses will be summarized by Strachan.Tomlinson in a report. This report will be forwarded to the CIHR-III and Forum participants for decision-making and future reference.
Discussion
- The level of interest of organizations will be much higher if they know that their input is going to make a difference.
- Distributing an information piece on existing virtual networks would be beneficial to CIHR-III and other participants in this Forum.
Closing Remarks
Dr. Bhagirath Singh, Scientific Director, CIHR-III, closed the meeting by thanking participants for their energy and enthusiasm throughout the Forum. He emphasized the exploratory nature of the consultation for all participants and stressed III's commitment to enhanced partner relationships with all involved. Dr. Singh also confirmed that he would share the Forum results with other CIHR institutes and would be in touch with Forum participants about the summary of questionnaires as soon as he had consulted with III Advisory Board members regarding implementation.
Strachan.Tomlinson
Introduction
Ultimately we're all here because we're interested in research excellence in infection and immunity and how it contributes to the health of all Canadians. (a participant)
The purpose of the CIHR Institute of Infection and Immunity (CIHR-III) Partnership Forum was to explore the development of a partner-based research network among associations and organizations involved in research in the areas of infection and immunity. Specific objectives were to:
- enhance linkages and interactions between CIHR-III and potential partners, and among partners
- explore opportunities for future collaboration in a national, partner-based research network, e.g., for working together on leadership initiatives, research priorities, and programs that promote innovative research to reduce the global burden of infection and immune-based diseases
- share information on current partnerships focused on research and knowledge translation in relation to infection and immunity
The Forum brought together 42 representatives of non-governmental organizations, health charities, professional societies and CIHR-III for an initial, exploratory consultation to facilitate the exchange of ideas. Participation was on a "without prejudice" basis, with no requirement to commit to partnerships.
Sonya Corkum, CIHR Vice President, Partnerships and Knowledge Translation, welcomed participants to the consultation. She emphasized that partnerships are key to implementing the CIHR mandate, and that input from a variety of organizations committed to research is essential in enabling CIHR to identify research needs and gaps. CIHR's goal is to enhance good research in Canada; it also has an overarching goal of knowledge translation - that is, CIHR does not believe only in supporting research, but also in translating it into action. In closing, Ms. Corkum noted that working with partner organizations is crucial to making this happen and that she looked forward to exploring with participants how CIHR can participate in future research collaborations with their organizations in mutually beneficial ways.
In his opening remarks, Dr. Tony Jevnikar, President, Canadian Society of Transplantation (CST), commented on the rich diversity of participants in terms of background, expertise and experience in partnering. He observed that this diversity represented both an opportunity and a challenge for participants in exploring how they might work together in the future to maximize resources.
Dr. Jevnikar also discussed the benefits of partnerships for everyone present: together, partner organizations can support a positive public face for health research in Canada and for each other's research efforts, as well as enable broad public recognition for the efforts of CIHR in relation to the health of Canadians. As Dr. Jevnikar commented, "CIHR should have the equivalent public profile of the National Institutes of Health in the US - this would benefit all of us here today and result in increased research capacity for Canada."
Dr. Bhagirath Singh, Scientific Director, CIHR-III stressed the importance of this consultation to the process of bringing the infection and immunity communities together to discuss CIHR's direction, Institute achievements to date, and how Forum participants can collaborate in the future. He noted that the goal of this meeting was not to define priorities or do strategic planning, but to establish communications between CIHR-III and other organizations and associations that will help build and strengthen partnerships.
Dr. Singh noted that CIHR-III is unique among CIHR institutes because of the broad nature of the field of infection and immunity - which makes mutual understanding a key characteristic for future communications and potential partnerships. He emphasized that partnership is not only about funding but also about the sharing of information, ideas and strategies.
Norms for Working Together
Participants used the following norms for working together to guide them in their discussions during the consultation:
- Respect diversity: accommodate differences.
- Communicate: be clear and concise.
- Be practical: stay out of the clouds.
- Question and listen actively.
- Think strategic: be open to opportunities.
Similarities and Differences
Infectious diseases kill over a third of the world's population, but the average person doesn't recognize this because of fragmentation in our community. Partnership is important to help us overcome this. (a participant)
As part of participant introductions at the Forum, participants explored their similarities and differences in small groups and developed the following points.
Similar Beliefs and Interests
- We share:
- a common interest in diseases related to infection and immunity and a goal to improve quality of life through limiting the impact of these diseases on the health of Canadians
- a belief in the importance of the need for health research, particularly the ability to translate research into action
- a commitment to peer review
- a mutual interest in building capacity and career development
- frustration related to insufficient research funding
- Given the nature of their mandates, some organizations are involved with multiple CIHR institutes and this takes more time and energy. It is especially taxing for smaller organizations.
- We all have a link to CIHR in some respect; we see ourselves as partners with CIHR-III and various other institutes by whatever definition of partnership each of us uses.
- We sometimes feel orphaned and under-represented in CIHR discussions, even though we may belong to a particular institute.
Shared Challenges
- An increasing number of organizations are interested in biomedical/clinical research and supporting clinical research outcomes.
- Mandates of participating organizations vary; commitments range from health advocacy and lobbying to training of professionals, maintenance of standards, facilitation of research and health promotion.
- Modalities of treatment are a common concern.
- Most organizations depend on the involvement and dedication of volunteers to achieve their goals.
- Many of us recognize that research related to CIHR pillars #3 (health services and health systems) and #4 (societal, cultural and environmental influences on health and the health of populations) needs further development.
- There is a shortage of capacity, especially related to training and mentoring.
- We are all fighting specific diseases/syndromes but we are not doing this in a coordinated manner.
Research Approaches
- Approaches to research can vary significantly among basic scientists and clinicians.
- There are many different approaches to research used in a wide variety of situations, e.g., quantitative, qualitative, community-based, narrative, or biomedical. Research emphasis also varies among organizations, e.g., on treatment, prevention or health promotion. Some organizations may focus on different CIHR pillars than others.
Organizational Approaches
- Organizations differ in size, influence, goals, mission, stakeholders and administrative structures, e.g., there are professional organizations, networks of organizations and clinical networks; some organizations combine one or more activities such as advocacy, fundraising, knowledge transfer, and research
- The origins of organizations have an influence on size and function, e.g., the ability to raise funds from government, industry and other sources and our accountability to donors regarding the use of funds.
- Many societies have a focus on one disease or area of research, e.g., the Canadian Blood Services focus on blood safety.
- Some organizations are more involved in communication and advocacy related to their disease area than in research.
- Groups have a variety of motivations for involvement and different approaches to advocacy.
- Different profiles and perceptions among infectious diseases can influence priorities (e.g., at CIHR) for some diseases; imbalances among the various disease groups need to be addressed.
- Organizations involved in the Forum define "partnership" in different ways.
- Boards of non-government organizations include volunteer lay people, while boards of professional societies and representatives from government tend to be paid professionals, either in a health professional or management capacity. This has a significant influence on potential partnering relationships.
- Few clinicians are represented in the organizations present at the Forum.
- Not-for-profit organizations are able to help fund research in partnership with other organizations such as CIHR; relatively small amounts of money can be increased significantly through similar partnerships.
Partnerships that Work
Successful partnerships lead to more successful partnerships. (a participant)
Forum participants identified the following key guiding principles of successful partnerships.
Build trust
- be realistic - promise less and deliver more
- build support for belief in the similarity, compatibility and practicality of goals
encourage partners to value and respect each other
- ensure that partner gains are mutually beneficial
- ensure that partners have confidence in the decision-making process, in particular that it is autonomous and will benefit everyone involved
- identify, clarify and address hidden agendas, without the assumption that they are ill-intentioned
make transparency a norm for partner interactions
- respect the perspectives and opinions of others, including those who are not at the table and may be affected by decisions
Develop partnership parameters up front
- clarify the commitment, contributions, limitations and expectations of each party to work toward achieving mutual outcomes
- create a governance framework with clearly defined roles, responsibilities and expectations
- develop and communicate a clearly articulated memorandum of understanding and terms of reference, including guiding principles, milestones and timelines, and mechanisms for how decisions will be made to benefit everyone involved
- discuss each partner's flexibility in adapting to changes
- ensure that all those involved are working towards a strong and realistic vision
- include an evaluation component in the project parameters
- preserve the mandate and identity of each organization in the partnership, addressing issues related to unique organizational strategies on an on-going basis. Recognize that although the organizational goals of partners don't need to be the same, the partnership outcomes do.
Enable collaboration and sharing
- discuss ways that shared infrastructures may provide an added benefit
- explore ways to share information, expertise, data, resources and ideas that will benefit all involved
- facilitate successful achievement of mutual goals
- keep an open mind to new ways of doing things
- learn from the experience of CIHR institutes, e.g., by using templates, established approaches and efficiencies
- name and address the big issues such as territory and turf
- recognize and support the benefits of multidisciplinary and complementary approaches that partnerships can bring
Foster potential growth for all parties
- build synergies and innovative approaches for moving forward
- engage stakeholders at the outset, particularly in planning and decision making
- establish strong relationships based on benefits for all involved
- support creative ongoing dialogue that includes learning opportunities that encourage the growth and development of partners
Build commitment and passion
- develop strategies and practical approaches to supporting and maintaining momentum, synergy and practical action among partners
- recognize that motivation emerges from shared needs and commitments
Focus on innovation
- create innovative approaches that are driven by common problems, expectations and needs
- develop new ways to solve problems and exploit opportunities in research
- develop research initiatives that produce something new that will have a significant impact in a focused area
Remember that people make relationships work, not organizations
- develop strong leadership and individual champions among members of the partnership
- foster good interpersonal relationships, respect and understanding
- recognize the importance of diversity: include a variety of perspectives and disciplines in decision-making and mentoring
Develop and support a common vision for the partnership
- work toward a strong, realistic, manageable vision
- ensure that projects are completed and evaluated
- address issues related to missions and key strategies of each organization
- recognize that the organizational goals of the partners do not need to be the same but the goals and outcomes of the partnership do
- tackle the big issues
When discussing key characteristics and guiding principles for successful partnerships, participants noted the following:
- public support can drive an initiative and help achieve its goals but isn't always needed to make a partnership successful - sometimes it is the result of a partnership;
- organizations frequently come together in support of a common goal but for different reasons
Partnership Opportunities
Working in small groups, participants developed options for partnership opportunities in the areas of infection and immunity. For the purposes of this consultation, an opportunity area was described as:
- contributing to the fields of infection and immunity
- addressing current issues related to these fields
- crossing at least two CIHR pillars (themes)
- multi-disciplinary
- national in scope
Generated options were discussed in plenary and the following list (alphabetical order) of priorities was developed as a basis for future action.
- Capacity Building
- Healthy Public Policy
- Knowledge Transfer
- New Technologies
- Public and Political Awareness, Education, and Support
- Unique Resources
Participants self-selected into small working groups to describe these areas further and suggest related actions.
Ms. Sonya Corkum, Vice-President, Partnership and Knowledge Translation, CIHR, talks with Mr. Wim Wolfs, Manager, Research Programs, Kidney Foundation of Canada during a breakout session with other members of Canada's volunteer organizations and professional societies working in the areas of infection and immunity at the CIHR Institute of Infection and Immunity Partnership Forum Jan. 31-Feb. 1, 2003, in Toronto, Ont.
Capacity Building
This opportunity area includes a focus on clinician researchers and teams, facilitation of early mentoring, funding and resources.
a. Supports include:
- CIHR training programs
- ease of communication due to relatively small population of Canada
- National Centres of Excellence
- Clinical Trials Networks
- other Centres of Excellence
b. Challenges include:
- ensuring sufficient resources
- prioritizing
- recruiting and retaining clinician scientists
- providing training programs for post-doctoral fellows
- competition with other career profiles, e.g., industry
- mentoring
- centralizing the process for applications for clinician scientists
c. Recommended Action for a National, Partner-Based Research Network
| |
Action |
| 1. |
Lobby for funds to support capacity building. |
| 2. |
Establish a national clearinghouse for community needs, individual and institutional research and development, mentoring, etc., including a standard form for research training programs. |
| 3. |
Establish an incentive program for clinician-scientist, university-level training programs, including other areas such as industry and health sciences. |
Discussion Notes:
- Group members noted that although the focus in this group was on clinician scientists as a mechanism, there is potential to use the same approach at other levels for stimulation of strategic development.
Healthy Public Policy
This opportunity area involves making connections to facilitate a health research policy environment in Canada, e.g., within governments, and/or between levels and layers of government. The focus is on addressing current disconnections.
a. Supports include:
- Romanow Commission Report and Kirby Report
- CIHR Partnership Fora
- Major government departments and agencies such as the Canadian Food Inspection Agency, Industry Canada and Health Canada
- Specialist societies
- Healthy Living research agenda
In addition, some provinces (such as Alberta and Quebec) have dedicated research funds, while others have smaller disconnected sources of funds. As well, there is often supervision and monitoring of data at the municipal level.
b. Challenges include:
- frequent changes in political leadership at all levels
- federal/provincial/territorial (F/P/T) communication inadequacies
- current complexities regarding the federal budget
- disconnections among societies
- need for education of government members
- provinces with independent financial resources can attract researchers away from other provinces
- pending privacy legislation
c. Recommended Action for a National, Partner-Based Research Network
| |
Action |
| 1. |
Educate key decision makers at all levels, e.g., ministers, deputy ministers, managers, policy consultants. |
| 2. |
Translate education into outcomes by helping scientists become more adept as opinion leaders. Recruit communicators and articulate scientific opinion leaders who are linked to policy developers and decision-makers and can transmit our messages. |
| 3. |
Foster collaboration to break down multiple solitudes; facilitate communications among large government departments; coordinate involvement of F/P/T levels and standardize communication among them. |
Knowledge Transfer
This opportunity area includes users and researchers working together (in both process and content) to optimize the transfer of research to users and develop a mechanism for evaluation. This area also includes studies on the use of research, recognizing that there are diverse philosophies and approaches to research.
a. Supports include:
- Immune Tolerance Network
- HIV/AIDS community organizations as a potential resource in knowledge translation strategies
- an increasing awareness of the need for knowledge translation
- knowledge transfer has a broader context and capacity for horizontal learning, i.e., performing knowledge transfer for one Institute benefits others
b. Challenges include:
- lack of funding
- lack of appropriate marketing and communication
- how to look beyond our own topic/theme
- some researchers may be unfamiliar with knowledge transfer; they may not regard knowledge transfer research as pure research or as a key component of a successful research project; others may perceive knowledge transfer as taking funding away from research
- there is no existing group of knowledge transfer experts to act as peer reviewers
- we don't know what works, e.g., across topics/themes; there is no central repository of information related to knowledge transfer; clinical trials are not being systematically translated to users
- we need to (a) increase/enhance receptor capacity, and (b) increase integration across pillars
c. Recommended Action for a National, Partner-Based Research Network
| |
Action |
| 1. |
Enhance quality, appropriate knowledge transfer as an integral part of successful infection and immunity research, e.g., changing the way funds are allocated, examining the peer review process, increasing awareness of funding agencies, etc.. |
| 2. |
Create new opportunities (e.g., meetings and workshops) where researchers and users can work together to address cross-cutting issues. |
| 3. |
Study, compile and disseminate best practice models and processes for knowledge transfer. |
New Technologies
This opportunity area includes: (a) new technologies and methodologies, e.g., diagnostic, therapeutic, outcomes assessment; (b) clinical trials networks and their components, e.g., protocol definitions, investment of investigators and patients, data management, analysis and dissemination, monitoring of protocols, liaison with communities, ethics and accountability, quality assurance, consistent support, grant- seeking, standards of practice.
a. Supports include:
- recognition that some models are funded, have good management and buy-in by communities and researchers and are driven by the grassroots
- well-supported and accredited research groups such as the Winnipeg National Microbiology Laboratory and the Edmonton National Transplant Registry
- the health care system supports population-based studies
- existing collegiality among researchers
- informal networks already exist and function well even without funding
- recognition by stakeholders that enrolment in trials raises the standard of care
b. Challenges include:
- providing resources for more clinical trial researchers and personnel
- increasing the investment of private industry
- lack of an efficient mechanism for clinical trials
- lack of funding for clinical trials networks for CIHR-III
- increasing support for biotechnology companies and product development
- existence of a government bureaucracy that may limit constructive action
c. Recommended Action for a National, Partner-Based Research Network
| |
Action |
| 1. |
Develop an RFA for a national clinical trials network in infection and immunity. |
| 2. |
Conduct an inventory of available resources for clinical trials networks. |
| 3. |
Do an environmental scan to identify studies on barriers to biotechnology companies regarding new technology development. If required, identify further barriers. Develop practical approaches for removing barriers. |
Discussion:
- "Technology" refers to technology for research, not just for clinical trials.
Public and Political Awareness, Education and Support
This opportunity area includes articulating the burden of infection and immune-based diseases, raising public awareness in support of research on infection and immunity (e.g., the need to increase the total amount of research dollars available), and encouraging government to champion research and science as part of the government's agenda.
a. Supports include:
- CIHR
- the beginnings of public awareness are in place, e.g., the public voluntarily funds research through health charities
- potential partnerships are in place and are helping to raise awareness of infection and immunity research issues.
b. Challenges include:
- strategic thinking that is too short-term
- lack of resources for communication among current and potential partners
- lack of commitment to research funding.
c. Recommended Action for a National, Partner-Based Research Network
| |
Action |
| 1. |
Formalize partnerships among CIHR-III stakeholders. Note: "Formalize" refers to a structure that is beyond ad hoc, i.e., it could be "virtual" but would require clear buy-in by partners. |
| 2. |
Develop an action plan to advocate to government (including politicians at all levels) to increase research funding to a level that will enable CIHR to fulfill its mandate. |
| 3. |
Develop a public communications strategy to engage the public support for infection and immunity health research, e.g., through a web site; promote research outcomes in an understandable manner using plain language through the media and other interested partners. |
Unique Resources
This opportunity area includes ways and means to discuss with all interested parties the development of Canadian clinical databases, registries and tissue culture banks.
a. Supports include:
- several participant organizations have had some experience in developing data banks and consent forms
- the Crohn's and Colitis Foundation of Canada has developed a tissue bank and web-based database that may serve as a useful model; it took several years to work through political, privacy and other issues and this model may save the time, effort and resources of other partnerships choosing to take on a similar initiative
- the Canadian Viral Hepatitis Network is developing consent forms that are both meaningful and legal; once the template is in place, the CVHN can share it with interested organizations.
b. Challenges include:
- different groups are interested in different collections: how can various collections be coordinated, if desirable?
- significant funding requirements
- obstacles to building tissue culture banks, patient registries, disease and genetic registries such as cost, privacy, informatics and security issues
- making the data available to researchers: accessibility involves complex variables such as cultural norms, legislation, provincial health system requirements.
c. Recommended Action for a National, Partner-Based Research Network
| |
Action |
| 1. |
Identify groups developing tissue culture banks and registries.. |
| 2. |
Coordinate a meeting of interested parties. |
| 3. |
Establish standard operating procedures for tissue collection/data entry. |
| 4. |
Promote and facilitate the safe exchange of tissues and cultures across borders, e.g., pressure politicians and regulators to develop and implement practical and sensible policies. |
A Partner-based Research Network for Infection and Immunity
The purpose of this Forum was to serve as a starting point for the development of new collaborations among associations and organizations working in the areas of infection and immunity research. After participants had explored opportunity areas of mutual interest, the discussion moved towards ways to work together in those areas.
Participants opened discussions on the possibility of a research network by describing a few examples that are currently in place, e.g.,
- National Centres of Excellence have a formal structure based on a business model. There is a Head, Research Management Committee, a Scientific Advisory Board and a Board of Directors.
- The Canadian HIV Trials Network has a formal structure involving five regions, each with a regional director. Each region reports through its director to the regional centre.
- The CIHR Vice-President of Knowledge Translation is involved in many informal, loosely organized networks.
- The Canadian Aboriginal AIDS Network has a representative advisory board.
- The Chair of the Clinical Trials Network, Canadian Blood and Marrow Transplant, reported that trials are managed by different people, depending on the network.
- The Canadian Network for Asthma Control involves 25 chiefly national organizations including pharmaceutical companies, Health Canada, professional organizations, and voluntary health organizations. Each member has a representative on the Board of Directors; six directors-at-large are elected. This structure is intended to enable all organizations to present a uniform message on the treatment and control of asthma.
Structural Considerations
Following this discussion about possible approaches, participants worked in small groups to consider possible structures for an infection and immunity-based partnership network. Following are key points or "best advice" provided during presentations of small group work.
- Given the preliminary nature of the partnership, "network" may be an inappropriate term. "Coalition" is another option.
- Develop the network as a communication vehicle at the highest level so that it can support smaller working groups based on the opportunity areas. Most initiatives could be taken on by smaller "lead" organizations, depending on feasibility. The network function would be to support and advocate for partners at a broad level, since addressing specific disease issues as an entire group is impractical.
- Follow the guiding principles and key characteristics developed at this Forum to create the network, e.g., ensure that the network has a shared mission, vision, goals, terms of reference and infrastructure.
- Some formalized way of doing business is required; the network should be a group that has well-defined objectives and meets regularly.
- Consider the entire spectrum of formality in terms of structure. Do we want a very loose structure where individuals and organizations can come and go as they please or a more formalized approach involving written commitments?
- Health charities want to stay engaged so that they can make a well informed decision about future partnership commitments such as peer review.
- Create a flexible structure that takes into consideration differing levels of resources available in potential partner organizations. Given the many different possible types of partnerships, organizations could be encouraged to explore limited partnerships within the larger network.
- Organize the network to minimize a potentially excessive administrative burden on organizations, e.g., excessive email traffic.
- Information about the new privacy legislation is one example of the role CIHR-III could play in keeping various groups aware of the current situation and developments that affect them.
Role of CIHR-III
- CIHR-III's role is to facilitate and enable a partnership network, not to direct it. The Institute will use the responses from the post-Forum questionnaire to guide it in defining the III role and resources to be allocated to such a network (see Next Steps).
- Because of restriction in terms of assuming an advocacy role, CIHR-III may wish to consider ex-officio status. Alternatively, advocacy could be addressed outside the network by partner organizations whose mandate allows it.
- A network structure that facilitated "one-stop shopping" at CIHR for partner organizations would be a major advantage for several reasons:
- multi-Institute relationships are a drain on organizational resources
- health charities experience difficulty when dealing with more than one Institute as there is a potential perception of competition or favouritism by or for one Institute or another
- dealing with more than one Institute on similar issues creates a situation where one burden of disease may be pitted against another.
Opportunity Areas
- If working groups are created based on recommended opportunity areas, it will be important to clarify their roles so that they don't overlap with the III Advisory Board.
- Management of the opportunity areas depends on the responses to the post-consultation questionnaire (see Next Steps).
- We shouldn't limit ourselves to these six opportunity areas if there are more that can be addressed or that emerge as important in the future.
Next Steps
- A briefing note will be prepared and distributed electronically to participants for use as a communications piece within their organizations. (completed)
- A draft Forum report will be forwarded to the Organizing Committee for comment, after which it will be finalized and distributed to participants. (completed)
- A questionnaire for post-consultation follow-up will be circulated with the final Forum report. Organizations will be requested to respond by March 14, 2003, after which their responses will be summarized by Strachan-Tomlinson in a report. This report will be forwarded to the CIHR-III Advisory Board and Forum participants for decision-making and future reference. (completed)
Discussion
- The level of interest of organizations will be much higher if they know that their input is going to make a difference.
- Distributing an information piece on existing virtual networks would be beneficial to CIHR-III and other participants in this Forum.
Closing Remarks
Dr. Bhagirath Singh, Scientific Director, CIHR-III, closed the meeting by thanking participants for their energy and enthusiasm throughout the Forum. He emphasized the exploratory nature of the consultation for all participants and stressed III's commitment to enhanced partner relationships with all involved. Dr. Singh also confirmed that he would share the Forum results with other CIHR institutes and would be in touch with Forum participants about the summary of questionnaires as soon as he had consulted with III Advisory Board members regarding implementation.
Appendix: Participants
| Name |
Position |
Affiliation |
| Art Zoccole |
Executive Director |
Canadian Aboriginal AIDS Network |
| Paul Lapierre |
Executive Director |
Canadian AIDS Society |
| Tim Rogers |
Research Associate |
Canadian AIDS Treatment Information Exchange |
| Dennis Cvitkovitch |
Assistant Professor |
Canadian Association for Dental Research |
| Kenneth Rosenthal |
President |
Canadian Association for HIV Research |
| Kirk Schultz |
Chair, Clinical Trials Network |
Canadian Blood and Marrow Transplant Group |
| John Saldanha |
Executive Director, Infectious Diseases |
Canadian Blood Services |
| Josée Chiarot |
Director, Medical/Scientific and Community Programs |
Canadian Cystic Fibrosis Foundation |
| Pamela Sokol |
Chair, Research Subcommittee |
Canadian Cystic Fibrosis Foundation |
| James Kreppner |
Corporate Secretary |
Canadian Hemophilia Society |
| Martin Schechter |
National Director |
Canadian HIV Trials Network |
| Richard McCoy |
Executive Director |
Canadian Infectious Disease Society |
| Coleman Rotstein |
President |
Canadian Infectious Disease Society |
| Sonya Corkum |
Vice-President, Partnership and Knowledge Translation |
Canadian Institutes of Health Research |
| Billie Potkonjak |
Director of Health Promotion and Patient Services |
Canadian Liver Foundation |
| A. Les McDonald |
Executive Director |
Canadian Network for Asthma Care |
| Bryce Larke |
Yukon Medical Health Officer |
Canadian Public Health Association |
| Pauline George |
Head, Immunodiagnostics |
Canadian Public Health Lab Network |
| Michael Ratcliffe |
President |
Canadian Society for Immunology |
| Eric Leith |
Past-President |
Canadian Society of Allergy and Clinical Immunology |
| Susan Koval |
President |
Canadian Society of Microbiologists |
| Anthony Jevnikar |
Professor/Director, Transplantation Nephrology |
Canadian Society of Transplantation |
| Louise Binder |
Chair |
Canadian Treatment Action Council |
| Warren D. Hill |
Executive Director |
Canadian Viral Hepatitis Network |
| Stephen Collins |
National Director |
Crohn's and Colitis Foundation of Canada |
| Tim McClemont |
Executive Director |
Hepatitis C Society of Canada |
| Lee Buckler |
Executive Director |
International Society for Cellular Therapy |
| Elizabeth Braden |
Vice-President, Partner and Fund Development |
Juvenile Diabetes Research Foundation |
| John Harnett |
Co-Chair, Research Council |
The Kidney Foundation of Canada |
| Wim Wolfs |
Manager, Research Programs |
The Kidney Foundation of Canada |
| Barbara Grimster |
National Executive |
Lupus Canada |
| Deanna Groetzinger |
Vice-President, Communications |
Multiple Sclerosis Society of Canada |
| Louise Tremblay |
Executive Director |
Canadian Society of Allergy and Clinical Immunology and others |
| Lorne A. Babiuk |
CIHR-III Institute Advisory Board, Director |
Veterinary Infectious Disease Organization |
| Kevin Glasgow |
CIHR-III Institute Advisory Board, Chief Executive Officer |
CIHR IAB Member |
| Helaine Shiff |
CIHR-III Institute Advisory Board, Member, Board of Chancellors |
Juvenile Diabetes Foundation International |
| Judy Bray |
Assistant Director, Special Projects |
CIHR Institute of Infection and Immunity |
| Patrick Haag |
Projects and Communications Officer |
CIHR Institute of Infection and Immunity |
| Tess Laidlaw |
Communications Assistant |
CIHR Institute of Infection and Immunity |
| Bruce Moor |
Assistant Director |
CIHR Institute of Infection and Immunity |
| Carol Richardson |
Adminstrative Officer |
CIHR Institute of Infection and Immunity |
| Bhagirath Singh |
Scientific Director |
CIHR Institute of Infection and Immunity |
