Executive Summary
Background and Rationale
Opening and Welcoming Remarks
Environmental Scanning State of the Art Reviews
Perspectives from Patients and Industry
Roundtable Discussions
SWOT Exercise
Building a National Research Perspective for Skin Disease Research: Creating Critical Mass and Credibility
Confirming Skin Health Research Priorities and Key Strategies
Raising the Profile and Impact of Skin Disease Research
Confirming Research Priorities: Recommendations for Advancing Research
Moving Forward with a National Plan for Skin Disease Research
Wrap up and Next Steps
A first meeting of skin researchers sponsored by CIHR
While skin disease is common in Canada and the financial and social burden of skin disease is significant, skin disease research has garnered less than 0.3% of all CIHR funding. The need for coordinated development of skin disease research in Canada is urgent. With this need in mind, approximately 60 individuals with a broad range of interests in skin health research attended a one-and-a-half day workshop on December 4-5, 2004. This workshop was designed to address issues pertinent to, and to formulate actions for, a national plan for skin health research. Participants represented a broad spectrum of stakeholders including researchers, clinicians (including dermatologists, rheumatologists and plastic surgery), patients, nurses, industry, voluntary health organizations (VHOs), academia, and government representatives-bringing together a diversity of opinion leaders unprecedented in the history of the Canadian skin health.
Broad representation to set agenda for skin disease research
The main objectives of the workshop were to provide insights into current skin disease research in Canada, determine the national priorities for skin disease research, and develop a framework for a national plan for excellence in skin disease research in Canada. The workshop was also intended to provide an opportunity for a diverse group of stakeholders to come together for the first time to share information and exchange ideas about the future of skin disease research in this country.
Five speakers set the context for workshop discussions with state-of-the-art reviews that addressed current research, identified gaps in research, and recommended research priorities for the future. Topics covered were skin research within the academic dermatology community (Harvey Lui), clinical research by community-based dermatologists (Jerry Tan), skin research outside of dermatology (Aziz Ghahary), regenerative medicine research (François Auger), and prospective clinical database research (Rolf Sebaldt). Perspectives from patients and industry were also presented, by Gail Zimmerman (President of the US National Psoriasis Foundation) and Lynne Bulger (President of the Canadian Dermatology Industry Association) respectively.
A roundtable discussion focused on two key questions: "What does skin research mean to you?" and "What should skin research mean to Canadians?" Discussion groups then participated in a Strengths, Weaknesses, Opportunities, and Threats (SWOT) exercise on skin health research in Canada. Shared responses included a recognition of strengths in relationships, clinical trials and select areas of research excellence, major weaknesses in funding and shortages in human capacity, opportunities for developing strong patient advocacy groups, and challenges in promoting the burden of skin disease. The lack of skin research capacity in Canadian Academic Health Centres was thought to be a major impediment to growth. The need for increased mentoring and training as well as support of skin disease researchers was felt to be acute.
The topic of building a national perspective for skin disease research, by creating critical mass and credibility, was addressed by four speakers. John Cairns presented an overview of the Canadian Institutes of Health Research (CIHR) Clinical Research Initiative mandate and tools. Cy Frank addressed the issue of leveraging the Institute of Musculoskeletal Health and Arthritis (IMHA) framework and best practices for increasing impact and productivity in research. The effectiveness of strategic training grants in building capacity was discussed by Philip Sherman, and finally, John Schrader presented the scientist's perspective on bridging the gap between clinicians and scientists.
Identifying key priorities
In four concurrent breakout group sessions, participants were asked to identify key skin health research priorities. They identified strategic priorities (i.e. need for infrastructure support, funding and development of training programs and mentorship), thematic priorities (i.e. inflammatory disease, reparative dermatology, health services research) and the need to build on current areas of strength and expertise (i.e. skin cancer, clinical trials and genetics). In addition, specific goals and actions were identified for four strategic areas: building capacity in skin health research, advancing clinical research, establishing a skin disease patient coalition, and strengthening the skin health research community/establishing strategic partnerships.
The second day of the workshop began with two speakers, who addressed the topic of raising the profile and impact of skin health research. Martin Weinstock discussed the definition and measurement of the burden of skin disease and the progress that was being made in the US by a number of agencies in advancing the case in this area. The importance of knowledge exchange between scientists, patients, and other stakeholders, and the roles of the IMHA Knowledge Exchange Task Force (KETF) were addressed by Flora Dell.
In four concurrent breakout group sessions, participants discussed research priority themes, which had been identified as a result of the previous day's workshop sessions. These included: Skin and Inflammation, Skin and Regeneration, Skin and the Environment, and Skin and Population Health.
Four themes for Skin Health Research
Participants were asked to confirm/amend the above four areas with respect to their inclusiveness to address skin research priorities in Canada. There was consensus from workshop participants that these themes should be amended as follows:
There was also agreement that strategic and operational planning (e.g. RFA's, strategic funding initiatives) for skin health research needed to reflect all of these four themes in order to properly address the overall skin health needs of Canadians. Population Health was viewed as a theme that should be incorporated as an element within each of the four core themes rather than being considered separately. In many instances certain specific research topics could very well fall under more than one of the above themes. For example aging was seen to be included under Skin Repair and Regeneration as well as Skin, Genes and Environment. The key point is that while there may be instances of overlap, these four themes are sufficiently inclusive of the entire skin health research agenda.
An action plan to increase skin-related research
The final plenary session focused on developing key action steps for moving forward with a national action plan for skin disease research. The following next steps were proposed:
Drs. Dutz and Lui, Workshop co-chairs, thanked all speakers and participants for their contributions and commitment to skin disease research. Dr. Frank, Scientific Director of IMHA, added his thanks and praise for an excellent first meeting and offered the ongoing support of his Institute to help sustain the directions that had been initiated at this workshop.
Skin disease affects everyone at some time during his or her life, with approximately 1% of the population having a moderately or severely disfiguring skin disease. Inflammatory skin disorders in particular impose substantial burdens on Canadians because of their prevalence, chronicity, and complications. Leg ulcers, psoriasis (chronic scaly skin patches), atopic dermatitis (chronic itchy and scaly skin), acne (pimples with permanent scarring and disfigurement), vitiligo (loss of skin color), and alopecia areata (immune mediated loss of hair) have all been demonstrated to have a profound impact on patients' lives. Hospital care expenditures for skin and related diseases in 1998 cost Canadian taxpayers 723 million dollars. In addition, cutaneous diseases are responsible for nearly half of the occupational disease that results in insurance claims.
"Skin disease can be disfiguring and painful and its treatment is extremely costly"
In addition to being a target for inflammation, the skin is one of the prime initiation sites of systemic immune responses: Skin immune responses very likely initiate the "atopic march" towards asthma. Thus a better understanding of skin inflammatory responses is important not only to aid in the management of skin disease but also of allied, such as atopic, and arthritic conditions. New therapies are available for the treatment of inflammatory skin diseases. "Biologics", agents that have been designed to target inflammatory pathways and that are effective in the treatment of arthritis, are also of benefit to inflammatory skin disease. The assessment of the cost-effectiveness and efficacy of these therapies in clinical practice is a work in progress. There are currently few researchers that are dedicated to studying these important areas in Canada. New strategies are required to attract, fund, and retain researchers in the broad area of skin disease research. This CIHR Skin Disease Research Priority Workshop was convened to address the burden of skin disease in Canada, survey the research landscape, and set priorities for inflammatory skin disease research in our country.
As a preamble to the workshop, representatives of the Canadian dermatology community and the dermatological pharmaceutical community met on October 14, 2004. They were asked to reflect upon the strengths of dermatology research in Canada and to suggest where further development of research should lead. The opinions that emerged were used as a point of departure for the organization of the December meeting. A summary of these opinions can be found in Appendix 4. This meeting was also a fundraiser that enabled the December workshop and the contribution, both intellectual and financial, of all parties is gratefully acknowledged.
The day began with an "environmental scan" of ongoing activities in multiple areas of skin-related research and with presentations by key stakeholders in skin health and disease. This was followed by structured discussion on the meaning and importance of skin disease research.
Welcome from Sponsoring Institutes
Cy Frank, Scientific Director, Institute of Musculoskeletal Health and Arthritis (IMHA)
Cy Frank welcomed participants and thanked the meeting's organizers for their hard work. He noted that the IMHA Advisory Board is looking forward to the product of the meeting and is grateful for the opportunity to observe and participate in the design of the research and the development of a strategic plan for skin research.
Bruce Moore, Assistant Director, Institute of Infection and Immunity (III)
Bruce Moore added his welcome to that of Cy Frank and his institute's keen interest in the outcomes of this workshop. He described two of the major strategic research foci and priorities at III: infectious disease and host response. The institute is on track to launch an RFA in autoimmunity in June 2005, so the targets set by this workshop may mesh nicely with the launch of the RFA.
Setting the Stage
Jan Dutz, Associate Professor, Division of Dermatology, UBC
Workshop co-chair Jan Dutz provided a context to the meeting by first presenting an overview of the functions and functioning of the skin. He noted that the skin has many roles:
Skin disease is common. Psoriasis affects at least one per cent of the population, while nearly 85 per cent of youth experience acne. Skin disease can be disfiguring and painful and its treatment is extremely costly. Yet, 0.3% of all CIHR funding goes to skin research. When all funding sources are included, some of the current major areas of research are in developmental biology, wound healing, drug delivery, photomedicine, melanoma, immunology, and non-melanoma cancers.
Dr. Dutz outlined the objectives of the workshop which were to:
He commented on the diverse group of participants who had been assembled for this meeting (Appendix 3) and the Fundraising Working Dinner Meeting in October 2004 (Appendix 4) which had yielded preliminary input on the meaning of skin research, research strengths and weaknesses, research priorities, and opportunities for partnership.
Dr. Dutz noted that traditional approaches to research are investigator-driven, but by making improved health outcomes the goal and bringing all stakeholders together, it is possible to design new approaches to research. He encouraged participants to think strategically and constantly consider ways in which the ideas, data, and collaborations presented at the meeting could be used to create action and move things forward.
Moderator: Neil Shear
Basic and Clinical Skin Research by Academic Dermatology in Canada
Harvey Lui, Professor and Head, Division of Dermatology, UBC
The big partners who conduct skin research in Canada today are universities and the pharmaceutical and cosmetic industries, Harvey Lui said. Government agencies, hospitals, and private foundations are also active to a lesser degree, although governments and foundations tend to fund and facilitate research, rather than actually doing it themselves.
Within universities, much of the skin research is conducted by dermatologists, but there is also active participation by dentists, rheumatologists, plastic surgeons, immunologists, and others. Each of Canada's 16 medical schools has a dermatology program, while five have skin research programs that conduct both bench and clinical research. In addition to research, university medical programs have the primary role of teaching future doctors how to care for skin.
Many university research teams are doing basic science on skin cancer pathogenesis, skin immunology, genodermatology, photomedicine and optics, and the emerging field of hair biology. In clinical research, much of the work is focused on clinical drug trials, particularly because the quality of Canadian drug-trial research is very high. Other areas of clinical research include: skin cancer epidemiology; adverse drug reactions; clinical registries and databases on acne, lymphoma, and pemphigus; emerging work on health outcomes; and wound healing.
Dr. Lui noted that the biggest determinant for research is availability of funding resources. This has resulted in a lot of research on skin cancer, because it is very fundable. It is important to move beyond that approach to a model where the needs of patients, and the interest and expertise of researchers drive research choices. Another important strategic consideration is the need to leverage funding from a variety of sources.
Many potential resources for research are still untapped, including the Canadian Foundation for Innovation, CIHR, researchers from outside dermatology, and patient support groups. Key academic challenges continue to be the difficulty in balancing excellent teaching with research, finding homes for clinical scientists, recruiting "stars" to skin research, increasing public visibility, and concern about achieving a critical mass for skin research.
Clinical Research-Trials, Epidemiology, Outcomes Research
Jerry Tan, Adjunct Professor, University of Western Ontario; Lead Investigator: Canadian Acne Epidemiological Survey
The research paradigms for community-based dermatologists in clinical practice are fairly straightforward, Jerry Tan said. To conduct research, the choice is between investigator-driven and industry-driven. With industry-driven research, the "box" is there; it is pre-packaged and product-focused. The tendency is to conduct Stage 3 and 4 clinical trials and the funding is front-end apparent and readily available.
Community-based dermatologists do not know where to go to access and participate in investigator-driven research. Further hindrances are time, resources, and infrastructure.
Most of the research successes in community-based practice have been in industry-driven research. A notable success in investigator-initiated research has been in the development of epidemiological databases for skin disease. The DermNet database is the fruit of a network of mutual support formed by more than 30 practicing dermatologists. It collects demographic information on populations of interest and data on outcomes (including quality of life issues), and has potential epidemiological applications. The Acne Database is a two-year cohort study that permits cross-sectional and longitudinal analysis. It has over 1200 patients enrolled so far from seven recruiting sites and the funding from industry has been very generous.
Some of the opportunities in community-based dermatological research lie in epidemiological field work, defining typical practice, patterns of practice, outcomes of care, and pharmaco-epidemiology. Nurturing academic academic collaborations is also important. The key to a successful future in community-based skin research is that priorities be "fundable and fun." It is critical to improve linkage with experts, clinical epidemiologists, informatics, and funding agencies.
Skin Research outside of Dermatology
Aziz Ghahary, Departments of Surgery and Medicine, University of Alberta
There are all kinds of researchers doing all kinds of skin research outside of dermatology in Canada, said Aziz Ghahary. He presented an overview, capturing the work of many of those researchers from across the country who work primarily in the area of wound healing. Drs. Larjava and Häkkinen, for example, are dental scientists at the University of British Columbia and study the process of wound healing. Dr. David Hart at the University of Calgary is a Member of the McCuaig Center of Joint & Arthritis Research and studies the roles of inflammatory processes in wound healing. Drs. Tredget (University of Alberta) and Gan (University of Western Ontario) are plastic surgeons and study factors influencing fibrosis in wound scarring. Cell movement is an essential feature in wound healing and is studied by Dr. Bosco Chan at the University of Western Ontario. Dr. Cho Pang is a senior scientist at the Hospital for Sick Children Research Institute and studies radiotherapy -induced skin fibrosis. Dr. François Auger heads the Laboratoire d'Organogènese Experimentale (LOEX), affiliated with Université Laval. Investigators at LOEX study multiple aspects of tissue regeneration (detailed in the next presentation). Dr. Ghahary also briefly outlined his own work on the development of skin substitutes for use in non-healing wounds and listed his studies on keratinocyte releasable factors that modulate wound healing. This overview demonstrates the variety of scientific and professional backgrounds skin researchers may draw upon to move skin science forward.
Regenerative Medicine Research-from bench to bedside
François Auger, Director, Laboratoire d'Organogénèse Expérimentale (LOEX)
François Auger presented a brief overview of some of the work currently taking place at LOEX. He described it as an experimental organogenesis laboratory, undertaking research on the skin, epidermis, blood vessels, bone and ligament, bronchial tubes, and the cornea. Currently, research is being conducted across a broad band of subject areas and interests:
The laboratory's success is linked to its multidisciplinary collaborative approach. When a new program is started, there is always a team of three principal investigators who include clinical science investigators, bioengineers, and clinical biologists because LOEX is goal-oriented.
Many granting agencies are involved in funding LOEX research, including large and small supporters from government, industry, and private foundations.
Prospective Clinical Database Research
Rolf Sebaldt, Associate (Clinical) Professor, Department of Medicine and Clinical Epidemiology/Biostatistics, McMaster University
At the present time, the knowledge garnered from clinical practice is not well-incorporated into the general body of knowledge on skin issues. "Real-world clinical practice is, collectively, an uncountable number of simultaneous prospective 'experiments' being done, but with no plan in place to systematically record, aggregate, analyze, interpret, report, or learn from the aggregate outcomes data," he said.
Sebaldt presented an overview of a model that he has used over the past several years, using a Clinical Data PipelineT to enable large-scale data acquisition and feedback.
Sebaldt briefly reviewed two clinical database projects: the Canadian Database of Osteoporosis and Osteopenia (CANDOO), the Canadian Lipid Study-Observational (CALIPSO) and the Canadian Hypertension Awareness Program (CHAP). The success of these research projects proves that:
Some of the advantages in using this model for clinical skin research include the ability to conduct longer-term patient outcome studies, quality-of-life evaluations, large-scale pharmacosurveillance programs-e.g., for biologics-and data-driven continuing medical education (CME) and patient self-management programs.
Moderator: Jerry Tan
The Patient View: Working with Voluntary Health Organizations to advance research, establish priorities, and transfer knowledge into practice
Gail Zimmerman, President and CEO, National Psoriasis Foundation (NPF), US
Gail Zimmerman prefaced her remarks by stressing that there is an important role for patient advocacy organizations in designing, conducting, and promoting research. That role is independent of the size of the organization or its specific focus. All it requires is vitality, commitment, and a degree of support from the medical community.
NPF was the founding member of the US Coalition of Skin Diseases. Some of the general goals of voluntary health organizations (VHOs) are education, awareness, advocacy, and research.
Voluntary health organizations offer unique access to government support, while providing a large patient constituency for fundraising and access to large bodies of patients. Typical VHO research initiatives include grants, registries, blood banks, epidemiological data collection, scientific meetings, clinical trials, and recruitment. All of these initiatives help build research capacity by providing the tools, helping researchers access them, generating new information and knowledge, and providing ways to link research to the clinic.
Bringing the patient view into the research arena has some obvious long-term benefits, including the more efficient use of research resources through collaboration and the creation of better results leading to better products and treatments. However, for success, it is important to design opportunities that are built on mutual respect, dialogue, and an understanding that patient groups and doctors bring different perspectives to research.
A View from Industry. Where are the needs and priorities for the future? Where are the opportunities for partnerships?
Lynne Bulger, President, Canadian Dermatology Industry Association
Industry is sensitive to the need for basic dermatology research funding in Canada, Lynne Bulger said. "There is a great deal of excitement for the many opportunities to prosper through partnerships between industry, patients, and government agencies." The dermatology industry currently supports the Canadian Dermatology Foundation and also has made a substantial commitment to funding clinical research in Canada, partly in fulfillment of the patent laws. However, clinical trial costs are increasing dramatically and there is fierce competition from other countries for site selection based on performance and cost.
Canada is a preferred country for conducting industry-supported clinical trials, due to its experienced dermatology trial centres and skilled investigators who tend to produce high quality results on time and within budget. However, trial opportunities at academic centres are decreasing because of escalating overhead and administrative delays, such as ethics boards.
Research targets that are sympathetic to industry will attract funding. These research goals include the following:
Bulger also presented some of the issues that constrain industry and, consequently, its support for research:
Fundraising for skin research cannot succeed unless all the stakeholders, including health care providers, government research and regulatory agencies, industry, and patients all have an active role in the process, Bulger concluded.
Following the plenary presentations, participants were grouped into 6 roundtables and were asked to provide their insights on the following two questions. Responses are summarized in Appendix 1.
As a second opportunity for roundtable discussion, attendees participated in a Strengths, Weaknesses, Opportunities and Threats/Challenges (SWOT) exercise with respect to skin disease research in Canada. Each of the six tables were asked to identify their top three priorities in each of the categories. There was consistency amongst many of the responses, including a recognition of strengths in relationships, clinical trials, and certain areas of research excellence; major weaknesses in funding and shortages in human capacity; opportunities for developing strong patient advocacy groups; and challenges in promoting awareness of the burden of skin disease. A summary of key responses appears in Appendix 2.
The next session explored planned and existing infrastructure within CIHR to promote research development. Recent initiatives include the promotion of clinical research, institute-specific theme development tools and strategic training grants.
Moderator: Jan Dutz
CIHR Clinical Research Initiative and Tools
John Cairns, Project Leader, CIHR Clinical Research Initiative
Dr. John Cairns joined the meeting by teleconference and provided participants with an update on the CIHR Clinical Research Initiative.
Strengthening clinical research will achieve a number of goals:
A number issues challenge the strengthening of Canadian clinical research:
The Clinical Research Initiative's vision is that Canada will be a world leader in clinical research by 2010. Three key strategies have been identified that will lead the way to realizing the vision: development and maintenance of the next generation of clinician-researchers, improvement of the national infrastructure for clinical research, and an increase in operational funding for clinical research.
In order to succeed, cooperation and collaboration is required among all key stakeholders:
Dr. Cairns suggested that these major participants must work together to build the case for clinical research, build partnerships, and build support for the initiative. Benefits will include a better health care system, improved health of Canadians, and a stronger economy. He concluded that the Clinical Research Initiative provides an exciting opportunity for skin health research.
Leveraging the IMHA Framework for Success
Cy Frank, Scientific Director, Institute of Musculoskeletal Health and Arthritis (IMHA)
Dr. Frank provided a brief update on IMHA's mandate before describing the various funding tools and mechanisms that his institute has developed to support research. IMHA's mandate is to advance the science of arthritis, bone, muscle, oral health, musculoskeletal rehabilitation, and skin. These areas of research are linked because they have similar injury and disease related components. The research communities that care for patients with chronic conditions affecting the musculoskeletal system and skin face a huge challenge, since they are treating large sectors of the population who face quality of life issues rather than life threatening conditions. Many of the diseases and conditions affecting the musculoskeletal system and skin tend to have similar mechanisms and triggers, are subject to environmental influence, and are often acquired by people who were previously healthy.
The strengths, weaknesses, opportunities, and threats that characterize the skin disease research community are identical to other IMHA areas, and therefore need the same tools and mechanisms. Leveraging must occur not only within the dermatology community, but through linkage with other areas of scientific research.
CIHR funding of research has increased over the past few years, with the CIHR Grants and Awards budget standing at $661 million for 2004/2005. CIHR currently has $4 million committed to skin research in the following categories: wound healing and burns/injuries, skin cancer, diseases and disorders such as psoriasis and scleroderma, and other areas including immunology, photo-aging, inflammation, and drug therapies. IMHA has committed $1.5 million directly to skin research grants, including forward funding to 2007/2008.
IMHA's vision is to sustain health and enhance quality of life by eradicating pain, suffering, and disability caused by arthritis, musculoskeletal problems, oral health, and skin conditions.
Working under the umbrella of the four CIHR pillars of population health, heath services/systems, clinical, and biomedical, IMHA has identified three strategic priorities:
Mechanisms to support the three priorities include the creation of open grants and awards, training programs, development grants, networks, Interdisciplinary Health Research Teams (IHRT)/Community Alliances for Health Research (CAHR), and national centres.
The toolbox for 2005 includes the following:
A short-term clinical investigator award program, designed to cover salary for up to three months has recently been launched. The program will be evaluated and repeated if successful. Details of programs, grants, and awards are available on IMHA's website.
Dr. Frank reiterated his support for skin health researchers identifying their research priorities and leveraging the various tools in the IMHA "toolbox."
Strategic Training Grants: An Effective Mechanism for Capacity Building
Philip Sherman, Professor of Paediatrics and Microbiology, Hospital for Sick Children, University of Toronto
Dr. Sherman's presentation was an overview of a CIHR strategic training program "Cell Signaling in Mucosal Inflammation and Pain," which fosters transdisciplinary health research.
The "Cell Signals" strategic research training network consists of five Canadian universities, nineteen top mentors, seven clinical research centres, seven international partners, four CIHR institutes (IMHA, III, IHSPR, and ICRH), and two VHOs (Canadian Cystic Fibrosis Foundation and Canadian Arthritis Society). Investigators at all levels, from students to senior scientists, are involved in the project. The project has been structured to address several of the CIHR pillars.
The goal of the "Cell Signals" program is to educate a new generation of investigators who will apply transdisciplinary approaches to generate new concepts of management for inflammatory conditions and associated pain by targeting the cell signaling systems from which they arise. Further information can be obtained by visiting www.cellsignals.ca. Dr. Sherman emphasized the potential of multidisciplinary training grants, particularly for smaller program areas like Dermatology, as an effective mechanism for building capacity in skin health research.
Bridging the Gap Between Clinicians and Scientists: A Scientist's Perspective
John Schrader, Director, The Biomedical Research Centre, UBC
The nature of science is that it is impossible to predict where the exciting and unexpected discoveries will arise, said Schrader.
Well-connected basic scientists read outside their own discipline, understand what the clinical problems are, and seek out clinicians as research partners. This ensures that scientific breakthroughs, wherever they occur in biology, are translated to the clinical setting-the so-called "bench to bedside" pathway. A critical mass of well-trained and well-connected scientists is needed. Funding of investigator-initiated research is essential since the best research stems from enthusiastic and passionate researchers.
Scientific discovery is not a linear process-most of the basic research is undertaken for the benefit of other bench scientists. However, if the research is conducted by well-connected researchers, knowledge translation can occur and clinical benefits can be realized. Educating basic scientists about related clinical matters and setting up forums where basic scientists and clinician scientists can exchange knowledge and ideas will make an impact in the research community.
In order to secure additional funding for a research project, Schrader suggested building partnerships at the front end, so that industry and other funding sources can be involved with project design. He added that in order to increase the number of successful grant applicants, it is important to lobby the government to increase funding and to apply best practices from other communities who have good success rates with grant applications.
Participants were next organized into four concurrent breakout groups to discuss four areas that are critical to advancing skin health research. These included building capacity, advancing clinical research, establishing a skin disease coalition, and strengthening the skin disease research community/establishing strategic partnerships. In addition to discussing specific questions related to their unique topic, each group identified top priorities in skin health research that included:
Strategic Priorities:
Thematic Priorities:
Opportunities to build on current areas of strength and expertise:
Why should CIHR invest in these areas?
The following are the highlights of specific recommendations emerging from each of the four breakout groups.
Group 1: Building Capacity
Where are the priorities for building capacity?
Further recommendations:
Where are the existing strengths and opportunities for building capacity?
This question was addressed during the morning's SWOT exercise. Existing programs for building capacity are in place, but have yet to reach maturity. A better means of identifying those with a genuine interest in skin research is needed. An interest in skin research must be nurtured in trainees and other researchers.
Where are the people resources on which attention should be focused?
The research interests of trainees should be protected during their career development via a network approach. A uniform knowledge base in skin disease should be established amongst trainees. Teachers should be assisted to become better role models through building their profiles and improving recognition of their contributions to research. A cross-disciplinary approach to teachers/trainers should be implemented.
What training models should be explored?
Training should be based upon a mentorship process. Partnerships between CIHR and other partners, including VHOs and industry, will be important. Existing strengths must be built upon and a multi-disciplinary approach applied. Basic science, clinical research, and quality of life must be integrated into the training process. A linkage should be formed with the community to foster innovation.
What are the critical next steps for this area?
Group 2: Advancing Clinical Research
What should the goals be for clinical research?
What strategies or tactics should be undertaken to achieve these goals?
Are there preferred program tools or mechanisms for moving clinical research forward?
What are the priorities and critical next steps in the area of clinical research?
Group 3: Establishing a Skin Disease Coalition
What would patients gain by coordinating their efforts organizationally?
Establishing a skin disease patient coalition would give patients a single voice and result in better education about skin disease and research for all stakeholders. Fundraising efforts would increase. A coalition would encourage and support dermatological research, resulting in new knowledge and technological advancements.
What are the goals for a skin disease patient coalition?
What are the principles that would govern this coalition?
What are the priorities and critical next steps in establishment of a coalition?
Group 4: Strengthening the skin disease research community and establishing strategic partnerships
How can we build better partnerships to address our research priorities?
What are the key challenges and enablers?
How can we build from our current strengths of industry in clinical trials to move to a broader agenda? Should we have specific partnership goals with industry?
What are the priorities and critical next steps in strengthening partnerships?
The second day began with presentations regarding the burden of skin disease and the impact of skin disease research and concluded with a delineation of research priorities and the development of an action plan to further promote skin disease research.
Chair: Richard Langley
Defining the Burden of Skin Disease
Martin Weinstock, Professor of Dermatology and Community Health, Dermatoepidemiology Unit, Brown University, Rhode Island
Dr. Martin Weinstock provided a provocative and informative presentation on the burden of skin disease. He noted that although skin is a well-defined organ, a precise definition of skin disease is a complex issue, since many of the most serious skin diseases-e.g., melanoma and lupus-affect more than one organ system. For advocacy purposes, it is not necessary to define skin disease, but it must be understood that it is an ambiguous concept.
Measurement of the burden of skin disease tends to be in dollar terms, but there are many other aspects to consider: mortality rate, years of potential life lost (YPPL), incidence rate, lifetime risk, prevalence, visits to clinicians, impairment, disability, handicap, quality of life, and utility.
In the US, the understanding of the burden of skin disease has progressed from a simple measurement of monetary costs, to an examination of prevalence, and finally to more complex measures of morbidity.
Dr. Weinstock described two projects underway in the US. The first is coordinated by the Society for Investigative Dermatology and the American Academy of Dermatology. Their goal is to inform policy makers of the importance of skin disease research and teaching. A variety of potentially useful datasets that focus on 22 specific skin diseases will be evaluated; a Canadian perspective may be included. A report is expected early in 2005.
The second project, under the direction of NIH, is based on a 2002 NIH workshop to report on the state of knowledge of the burden of skin disease. The goals of this project are to describe data sources, summarize existing methodology and metrics, assess data quality and identify "holes" in data sources, and recommend next steps to improve knowledge of the burden of skin disease. A report is expected in November, 2005.
US datasets under review include the following:
"A lot of the burden of skin disease is non fatal, but it really bothers people: "Doc I know that I have crescendo angina, but this itch is really killing me"
The burden of skin disease is a complex issue that cannot be clearly defined by the application of mortality statistics. In addition, people can be tormented by non-fatal skin conditions, which may co-exist with other serious conditions. Social aspects of skin disease are often critical and severe, and these must be taken into account. Statistics documenting the prevalence of skin conditions and the number of office visits to physicians are useful measures of the burden of skin disease.
There is no single, defensible number for the burden of skin disease. Measuring skin disease burden requires initial focus on the scope and definition of what will be measured. Resources are needed to move the project forward and the multiplicity of measures and validity issues must remain at the forefront. This is a long-term effort which has important implications for advocacy of skin disease research.
Effective Knowledge Exchange Strategies
Flora Dell, consumer advocate, Osteoporosis Society of Canada, and Chair of IMHA's Knowledge Exchange Task Force (KETF)
IMHA's research vision includes supporting forums with and between stakeholders and creating two-way communication opportunities, said Flora Dell. By encouraging stakeholders to "speak the same language," dissemination of relevant issues is promoted to a wider audience.
The mandate of the Knowledge Exchange Task Force (KETF) is to proactively accelerate the translation and exchange of new research knowledge among researchers, stakeholders, and partner communities for the benefit and improved health of Canadians. The KETF aims to create partnerships and two-way communication among researchers, the general public, patient groups, NGOs, private sector organizations, policy makers, planners, managers, health care providers, and health care administrators.
Researchers have a responsibility to present their research to the KETF in lay language that is clear and concise, thereby creating a pathway of communication and knowledge exchange. Successful knowledge exchange results in the end-user becoming an active research partner (deemed to be an "ambassador") in the promotion and activation and implementation of the research with peers, organizations, and communities.
Ms. Dell encouraged participants of the workshop to join the KETF and become active "research ambassadors" for skin health research.
Four preliminary research priority themes were identified as a result of the previous day's breakout group sessions. These included:
In the four concurrent breakout group sessions that followed, participants were asked to consider whether or not these themes were inclusive to address skin research. If not, what needed to be added or eliminated? During the report back to plenary the deliberations of each group were taken into consideration and participants achieved consensus on the following four priority research themes. These include:
There was also agreement that strategic and operational planning (e.g. RFA's, strategic funding initiatives) for skin health research needed to reflect all of these four themes in order to properly address the overall skin health needs of Canadians. Population Health was viewed as a theme that should be incorporated as an element within each of the four core themes rather than being considered separately. In many instances certain specific research topics could very well fall under more than one of the above themes. For example aging was seen to be included under Skin Repair and Regeneration as well as Skin, Genes, and the Environment. The key point is that while there may be instances of overlap, these four themes are sufficiently inclusive of the entire skin health research agenda.
In the summaries of the breakout group discussions that are reported below, the rationale for the changes to the above priority research themes is presented. In addition, each breakout group discussed specific questions for their assigned topic.
Are the four research priority themes inclusive to address skin research? If not, what should be added or eliminated?
Using the four CIHR pillars, where do the priorities lie for Skin and Inflammation?
1. Biomedical:
2-4. Clinical Research, Health Services Research, and Population Research:
These three areas were chosen because of existing expertise and the prevalence of these skin disease amongst the Canadian population.
What are the preferred funding mechanisms or tools within CIHR or outside CIHR to advance research in Skin and Inflammation?
The primary strategy is to use existing strengths and to leverage them into successful applications.
1.Biomedical:
2. Clinical Research:
3-4. Health Services/Population Research:
Are the four research priority themes inclusive to address skin research? If not, what should be added or eliminated?
What areas within skin disease should be the focus for research under CIHR pillars 3 and 4?
Population Research:
Health Services Research:
What are the preferred funding mechanisms or tools within CIHR or outside CIHR to advance research in Skin and Population Health?
Are there important considerations (barriers, enablers) for advancing research in Skin and Population Health?
Are the four research priority themes inclusive to address skin research? If not, what should be added or eliminated?
Using the four CIHR pillars, where do the priorities lie for Skin Regeneration?
Biomedical:
Clinical Research:
Health Services Research:
Population Research:
What are the preferred funding mechanisms or tools within CIHR or outside CIHR to advance research in this area?
Within CIHR:
Outside CIHR:
Are there important considerations (barriers, enablers) for advancing research in Skin Regeneration?
Are the four research priority themes inclusive to address skin research? If not, what should be added or eliminated?
Using the four CIHR pillars, where do the priorities lie for Skin and the Environment?
No consensus was reached here. Participants expressed a need for a framework or criteria to guide them in assigning priorities for the four pillars. Should it be based on unmet patients' needs, unmet researchers' needs, or where existing areas of expertise lie? The conclusion was to focus on current investigator-driven strengths in addition to unmet needs. Priority building should be a process rather than a "one-time" event.
A number of areas were suggested: photobiology and photomedicine, gene/environmental interaction, cancer (although this may be better as a separate research theme), phototherapy, occupational skin health, population health, and effective channels for raising public awareness.
What are the preferred funding mechanisms or tools within CIHR or outside CIHR to advance research in Skin and the Environment?
Are there important considerations (barriers, enablers) for advancing research in Skin and the Environment?
Having achieved consensus on four priority research themes, the final session of the workshop was focused on establishing an action plan for moving forward with skin disease research in Canada. Participants made the following recommendations:
Action Plan
1. Define the social, economic, and medical burden of skin disease
2. Implement strategies and mechanisms to build capacity in targeted areas
3. Establish partnerships and alliances
4. Establish a skin disease patient coalition
5. Enhance knowledge exchange
6. Establish effective communication mechanisms for the Alliance
Drs. Dutz and Lui thanked all the participants for an extremely productive meeting and for their contributions in the plenary and breakout sessions. They thanked the speakers for their informative presentations and the "volunteer" facilitators and recorders for diligence and hard work.
As a next step, the meeting chairs and will prepare a Summary of Proceedings that will be submitted to IMHA and III for support in moving forward the new research agenda. It will also be circulated to all participants and disseminated broadly to potential partners to promote the skin health research agenda and to encourage collaboration on many of the above noted strategies.
Dr. Frank added his thanks to all participants and noted that "in his four years, he had never seen a workshop move as quickly and as far" with respect to achieving consensus on research priorities and producing an actionable implementation plan. He emphasized his interest in receiving the proceedings and in working with the soon to be created "Canadian Alliance for Skin Health Research" on this new research agenda.
Drs. Dutz and Lui closed by thanking Bernice Chu, Val McHugh for their logistics and technical support and Helena Axler for her planning and facilitation assistance.
The workshop adjourned at 12 noon.
Overall participants felt that the meeting was a success. The workshop met participants' expectations (Score 4.67/5, 21 respondents) and, according to the respondents, achieved the stated objectives (Score 4.48/5). Comments from participants are reproduced in Appendix 5.
