Skin Priority Workshop - December 2004

Table of Contents

Executive Summary

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:

  • Skin Inflammation and Infection
  • Skin Repair and Regeneration
  • Skin, Genes, and the Environment
  • Skin Cancer

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:

  1. Create a Task Force to 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 in the form of a Canadian Alliance for Skin Health Research (Drs. Harvey Lui and Jan Dutz to lead)
  4. Establish a Skin Disease Patient Coalition (Denis Morrice to lead)
  5. Enhance knowledge exchange (drawing from the expertise of the Knowledge Exchange Task Force and creating "Research Ambassadors")
  6. Establish effective communication mechanisms building on existing infrastructure (e.g. IMHA, CDF, CDA, LOEX, DermNet)

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.

Background and Rationale

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.

Day 1—Saturday, December 4, 2004

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.

Opening and Welcoming Remarks

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:

  • a physical barrier that prevents the body from drying out;
  • a radiation barrier that protects from the sun and other harmful radiation;
  • a microbial barrier that protects against infection;
  • a blanket and radiators that either warms or cools the body;
  • a sensual organ intimately linked with the nervous system.

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:

  • Provide insights into current skin disease research in Canada;
  • Determine the national priorities for skin disease research ;
  • Develop a framework for a national plan for excellence and skin disease research in Canada;
  • Provide an opportunity for researchers, academics, patients, industry and other key stakeholders to come together for the first time and share information and exchange ideas about the future of skin disease research in Canada.

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.

Environmental Scanning-State of the Art Reviews

Where are we today? What are the gaps in research and what should be priorities for the future?

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:

  • tissue engineering and self-assembly;
  • physiological studies;
  • innervations of skin;
  • nanotechnology and tissue engineering;
  • endothelialization;
  • re-epithelialization and dermal-epidermal interactions;
  • pathophysiology and histology;
  • pharmacotoxicology and dermatoabsorption.

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 Pipeline™ 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:

  • comprehensive prospective observational clinical data collection programs can successfully be "layered into" routine clinical care;
  • large-scale, multi-centre collaborations using standardized data collection and centralized aggregation, cleaning, and feedback processes are possible;
  • the process of systematically gathering data from routine clinical care is efficient, participant-friendly, and can actually save time;
  • collaboration with an experienced, specialized, clinically sensitive data management centre is essential to succeed in "delivering" the study.

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.

Perspectives from Patients and Industry

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:

  • causes and prevention of skin disease;
  • maintenance of skin health;
  • epidemiology of skin diseases in Canada;
  • pharmacogenomics: identifying patients who will benefit from new and existing therapies;
  • pharmacoeconomics: effectiveness models;
  • safety and efficacy studies: phase III-IV;
  • pharmacovigilence: post-marketing safety surveillance; biologics.

Bulger also presented some of the issues that constrain industry and, consequently, its support for research:

  • referenced based pricing;
  • long delays in formulary listing;
  • lack of dermatology coverage in critical geographic areas of Canada;
  • insufficient residency positions to replace the declining numbers of practicing dermatologists.

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.

Roundtable Discussions

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.

SWOT Exercise

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.

Building a National Research Perspective for Skin Disease Research: Creating Critical Mass and Credibility

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:

  • bridge the translational gap between biomedical discoveries and new agents/practices of proven efficacy and safety;
  • determine the best diagnostic, therapeutic, and preventative agents/practices from those currently available;
  • ensure bi-directional pathways from bench to bedside to community;
  • facilitate evaluation of health care strategies for optimal clinical- and cost-effectiveness;
  • derive ancillary benefits of clinical research;
  • stimulate economic growth.

A number issues challenge the strengthening of Canadian clinical research:

  • small number of clinicians in clinical research training and careers;
  • few clinical research centres, particularly in comparison to US and UK;
  • modest operational funding;
  • under-resourced patchwork of ethics review mechanisms;
  • complex, expensive regulatory and ethical environment;
  • lack of public awareness and support;
  • Canadian health research discoveries rarely developed, definitively tested, and manufactured in Canada.

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:

  • funders: CIHR, Canadian Foundation for Innovation (CFI), voluntary funders, and provincial sources;
  • institutions: teaching hospitals and universities;
  • governments: federal and provincial;
  • industry: pharmaceutical, bioscience, and device;
  • health professions: associations and accreditors;
  • regulators: government, ethics, and public.

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, health services/systems, clinical, and biomedical, IMHA has identified three strategic priorities:

  • tissue injury, repair, and replacement;
  • physical activity, mobility, and health;
  • pain, disability, and chronic diseases.

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:

  • restoration of the workshop program;
  • planning and development grants;
  • tools and techniques for new discoveries and inventions;
  • new emerging teams;
  • strategic training grants;
  • priority announcement (gap grants);
  • grantsmanship program;
  • mentorship programs—visiting professors and short-term visits.

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 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.

Confirming Skin Health Research Priorities and Key Strategies

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:

  • infrastructure support for investigator-driven projects in addition to funding
  • development of training programs
  • broadening the definition of skin research
  • communication of importance of skin research to the medical community and the public using statistics
  • training and mentorship of skin researchers to improve expertise and enhance success
  • build capacity
  • increase funding

Thematic Priorities:

  • inflammatory skin diseases—e.g., atopic dermatitis, psoriasis, and connective tissue disease
  • autoimmune diseases—e.g., vitiligo, scleroderma, lupus, and alopecia areata;
  • reparative dermatology: wound healing and repair and its associated complications
  • clinical trials in dermatology
  • clinical and observational epidemiology for both common and rare conditions—standard clinical practice and outcomes should be studied
  • psychosocial research to provide support for other areas of skin research;
  • health services and public health policy

Opportunities to build on current areas of strength and expertise:

  • skin cancer—melanoma and non-melanoma
  • genetics—genodermatosis, pharmacogenomics
  • inflammation, infection, and immunity
  • clinical trials
  • wound healing/regeneration (stem cells)
  • environmental impact on skin disease (i.e., radiation, weather, microbes)
  • aging/degeneration

Why should CIHR invest in these areas?

  • Skin disease is relevant to a large proportion of the population, particularly due to its high morbidity and high psychometric impact. Skin is accessible as a model system.
  • Skin disease is a burden for Canadians. Relieving that burden represents a significant Return On Investment for Canada.
  • Expertise in the above named areas of research already exists. There is a need within Canada for further research in these areas, because they are costly to the health care system and have the highest impact of all skin diseases on population health.

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?

  • The capacity for collaboration and interaction between clinicians and basic scientists must increase.
  • An infrastructure to support the culture of skin health research must be put into place in order to communicate the value of skin research.
  • An inventory of skin research must be created and maintained, in order to identify where expertise lies, where collaborations can be encouraged, and where gaps exist.

Further recommendations:

  • prevention of efflux of trainees;
  • need for faculty slots;
  • provision of training for non-academic roles;
  • number of clinician scientists must increase;
  • strategies for building capacity must be inclusive of all sectors of skin research community.

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?

  • identify areas of excellence in building capacity;
  • identify partners within industry, NSERC, VHOs, and patient advocacy groups.

Group 2: Advancing Clinical Research

What should the goals be for clinical research?

  • to build on pre-existing expertise of clinical trialists and clinical epidemiology—including provincial databases;
  • to establish and develop a critical mass of researchers;
  • to collaborate with a wider range of stakeholders;
  • to establish a clinical trials support cooperative that offers detailed development of protocols arising from small proposals.

What strategies or tactics should be undertaken to achieve these goals?

  • collaboration, both within and outside the skin research community—vertical and lateral;
  • mentoring of investigators;
  • establishment of teams and networks;
  • establishment of opportunities from seed grants from CIHR and other origins;
  • CIHR leveraging of Canadian Dermatology Foundation (CDF) grants.

Are there preferred program tools or mechanisms for moving clinical research forward?

  • grantsmanship;
  • development of new/emerging teams;
  • utilization of workshop and mentorship programs.

What are the priorities and critical next steps in the area of clinical research?

  • Establish links between patients, clinicians, and basic scientists.
  • Translate clinical questions into research protocols.

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?

  • education—of the public and particularly the patient;
  • funding for research and other areas that eventually support research;
  • communication between patients, researchers, and other members of the skin research community.

What are the principles that would govern this coalition?

  • Those affected by a decision should be involved in making that decision.
  • Equal representation—a variety of skin diseases and disorders should be represented.
  • Members should be prepared to lobby for all skin diseases.
  • Members should take responsibility for identifying the needs of people with a skin disease—e.g., respect and sensitivity

What are the priorities and critical next steps in establishment of a coalition?

  • Create a title and acronym. Suggestions include Skin Alliance of Canada (SAC) or Canadian Skin Patient Coalition (CSPC).
  • Hold a founding meeting.
  • Acquire a "champion" and a "driver-leader."
  • Obtain operational funding.

Group 4: Strengthening the skin disease research community and establishing strategic partnerships

How can we build better partnerships to address our research priorities?

  • Develop a networking process that includes a database of knowledge and expertise.
  • Build a coalition of skin disease stakeholders.

What are the key challenges and enablers?

  • broadening dermatological disease training to reach all health professionals to enhance uptake of skin disease research as a career option;
  • encouraging formation of patient support and advocacy groups;
  • halting the "brain drain";
  • simplifying the grants and ethics review processes.

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?

  • challenge industry to increase funding for research chairs, summer studentships, and mentorships;
  • CIHR funding of investigator-initiated research by matching or leveraging industry-funded clinical trials;
  • create opportunities for industry to fund investigator-initiated research;
  • partner with industry to encourage open access to and sharing of clinical databases.

What are the priorities and critical next steps in strengthening partnerships?

  • communication among all stakeholders;
  • development and funding of a coalition infrastructure.

Day 2—Sunday, December 5, 2004

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.

Raising the Profile and Impact of 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:

  • National Health and Examination Survey (NHANES)
  • National Health Interview Survey (NHIS)
  • Behavioural Risk Factor Surveillance System (BRFSS)
  • Medical Expenditure Panel Survey (MEPS)
  • National Ambulatory Medical Care Survey (NAMCS)
  • Surveillance, Epidemiology, and End Results (SEER)
  • mortality statistics
  • administrative databases (Medicare, health maintenance organizations, insurers)

"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.

Confirming Research Priorities: Recommendations for Advancing Research

Four preliminary research priority themes were identified as a result of the previous day's breakout group sessions. These included:

  • Skin and Inflammation
  • Skin and Population Health
  • Skin Regeneration
  • Skin and the Environment

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:

  • Skin Inflammation and Infection
  • Skin Repair and Regeneration
  • Skin, Genes, and the Environment
  • Skin Cancer

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.

1. Skin and Inflammation

Are the four research priority themes inclusive to address skin research? If not, what should be added or eliminated?

  • more prominent role for skin cancer;
  • more prominent role for genetics;
  • Skin and Inflammation should involve IMHA, III;
  • renamed "Skin and Genes and the Environment" should involve IMHA, IG, ICR, IHDCYH, IPPH, and IHSPHR;
  • renamed "Skin Regeneration and Repair" should involve IMHA, INMA, and III.

Using the four CIHR pillars, where do the priorities lie for Skin and Inflammation?

1. Biomedical:

  • autoimmunity and the skin;
  • mechanisms of inflammatory skin damage.

2-4. Clinical Research, Health Services Research, and Population Research:

  • acne
  • psoriasis
  • eczema

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.


  • need to build capacity through training programs—linking to existing Strategic Training Initiative in Health Research (STIHRs) is an economical way of doing this;
  • co-sponsored traineeships (CDA, patient advocacy groups, disease-specific VHOs), which allow co-supervision by experienced clinicians and scientists.

2. Clinical Research:

  • need for comparative therapeutics outcomes research;
  • build upon existing clinical trials network, using Dermnet and Clinical Research Initiative to assist in this process;
  • the existing clinical trials network is sufficiently mature to apply for a NET grant;
  • clinical trials network development should be integrated into STIHRs, in order to train Canadian dermato-epidemiologists.

3-4. Health Services/Population Research:

  • important to create disease specific registries from the point of view of patient organizations and industry;
  • data obtained from registries should be communicated to patient groups and clinicians.

2. Skin and Population Health

Are the four research priority themes inclusive to address skin research? If not, what should be added or eliminated?

  • skin cancer, which represents one third of all cancers, needs to be under the dermatology umbrella, despite the existence of the Institute of Cancer Research;
  • should separate mechanism and cause—all research themes should include genetics and the environment;
  • recommend replacing "Skin and Environment" with "Skin and Neoplasia";
  • ensure dermatology representation within related institutes, including III and ICR.

What areas within skin disease should be the focus for research under CIHR pillars 3 and 4?

  • recommendation from the group that population and health services research should be conducted concomitantly.

Population Research:

  • Examine global skin disease burden prior to specific disease focus.
  • Study population trends for incidence and prevalence over time, including the burden on physicians and risk factors for disease.
  • Examine impact on patients' quality of life.

Health Services Research:

  • health care delivery, including telemedicine and GP skin screening;
  • health care access, including availability of physicians and medications, and geographic disparities;
  • management strategies using complex interventions—examples include offering home visits to educate patients, and organization of office practice to include a nurse educator;
  • costs;
  • health care outcomes in community.

What are the preferred funding mechanisms or tools within CIHR or outside CIHR to advance research in Skin and Population Health?

  • Make a priority announcement for research on a specific theme.
  • Hold workshop to develop specific methodology for the research theme.
  • Conduct a pilot study using planning grants.
  • Seek expertise from grantsmanship and mentorship programs to assist in preparation of application
  • Apply for open competition grants.

Are there important considerations (barriers, enablers) for advancing research in Skin and Population Health?

  • Privacy Act is a barrier—however, going through the appropriate channels, including the national ethics review board, is an effective way to tackle the barrier;
  • limited capacity—more training in research and more epidemiologists are needed;
  • importance of chronic skin disease must be communicated to the public to increase funding.

3. Skin Regeneration

Are the four research priority themes inclusive to address skin research? If not, what should be added or eliminated?

  • "skin" should be redefined to include sub-categories within the skin—e.g., sweat glands;
  • genodermatoses not represented by proposed research themes;
  • rename as "Skin Inflammation and Infection";
  • rename as "Skin Repair and Regeneration."

Using the four CIHR pillars, where do the priorities lie for Skin Regeneration?

1. Biomedical:

  • enhanced wound healing research (cell therapy, gene therapy);
  • skin pathophysiology;
  • finding novel approaches to skin regeneration (bioengineering);
  • angiogenesis;
  • studying basic mechanisms of fibrogenesis;
  • photomedicine.

2. Clinical Research:

  • therapeutics;
  • analysis of ulcers (prevention);
  • establishment of databases;
  • enhanced psychosocial research in skin disease.

3. Health Services Research:

  • analysis of gaps in access and care of skin repair and regeneration;
  • analysis of care delivery methods.

4. Population Research:

  • bridge the gap of knowledge transfer and exchange in skin repair and regeneration;
  • culture- and age-specific needs assessment;
  • better analysis of cultural and ethnicity in skin repair and regeneration;
  • economic burden analysis.

What are the preferred funding mechanisms or tools within CIHR or outside CIHR to advance research in this area?

Within CIHR:

  • investigator-driven research—primarily through operating grants, but also through strategic RFAs;
  • foster training grants—STIHRs;
  • leveraging with other CIHR institutes.

Outside CIHR:

  • partnerships with private foundations;
  • industry partnerships;
  • leveraging patient advocacy groups;
  • ancillary partnerships—e.g. insurance industry, firefighters' funds.

Are there important considerations (barriers, enablers) for advancing research in Skin Regeneration?

  • lack of funding;
  • lack of integrated communication—within community and cross-disciplinary;
  • heavy burden of regulatory affairs;
  • advocacy groups;
  • telemedicine;
  • utilize good working models from other countries.

4. Skin and the Environment

Are the four research priority themes inclusive to address skin research? If not, what should be added or eliminated?

  • Cancer an important area and must be given serious consideration, but unsure which theme it should be placed under.
  • Aging another important area, but difficult to categorize.

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?

  • capacity training—i.e., strategic training of key researchers;
  • partnerships rather than sponsorships should be encouraged, with emphasis upon patient participation.

Are there important considerations (barriers, enablers) for advancing research in Skin and the Environment?

  • patient participation and advocacy groups;
  • identifying potential new partners;
  • establishing specialized grants targeted to specific potential donors;
  • recruiting clinician scientists rather than trainees.

Moving Forward with a National Plan for Skin Disease Research

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

  • Data must be gathered to support the case for skin disease research.
  • The next step is to determine what kind of resources and expertise are available to facilitate the creation of database(s) able to demonstrate the burden of skin disease in Canada.
  • A task force to tackle this issue must be established. A suggestion was made to request short-term "salary replacement" funding to allow a task force leader to free up time to move this forward quickly.
  • A simple tool to support this initiative would be the creation of a website with links to resources, organizations, etc.
  • Partnerships with Canadian Dermatology Association,, Dermnet, and other groups are vital to success.
  • US data on the burden of skin disease, once they are published in 2005, can be used as a starting point, but Canadian data must be obtained.
  • A CIHR team grant could support a project to gather data on the burden of skin disease, which would then lead to leveraging for other grants.

2. Implement strategies and mechanisms to build capacity in targeted areas

  • Collaboration and interaction between clinicians and basic scientists must increase.
  • An infrastructure to support the culture of skin health research must be put into place in order to communicate the value of skin research.
  • An inventory of skin research must be created and maintained, in order to identify where expertise lies, where collaborations can be encouraged, and where gaps exist.
  • Potential partners within industry, NSERC, VHOs, and patient advocacy groups must be identified.

3. Establish partnerships and alliances

  • A formal alliance should be founded, possibly named "Canadian Alliance of Skin Health Research," using the resources of IMHA to coordinate the building of a database of potential partners for the advancement of skin health research.
  • Building on the success of this workshop, it was recommended that the founding leaders of this alliance should be Drs. Jan Dutz and Harvey Lui.
  • The possibility of a formal partnership with National Institute of Arthritis and Musculoskeletal and Skin Diseases should be explored.

4. Establish a skin disease patient coalition

  • Foster the development of the Skin Disease Patient Coalition
  • Denis Morrice agreed to take the lead on developing this initiative.

5. Enhance knowledge exchange

  • Participants from this workshop were encouraged to join the IMHA-KETF, with the potential of becoming "Research Ambassadors" for skin disease research.

6. Establish effective communication mechanisms for the Alliance

  • Use existing infrastructure (eg. through IMHA, DermNet, Loex, CDF, CDA) to create the immediate capacity for researchers and other members of the "Alliance" to communicate and share ideas.

Wrap up and Next Steps

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.

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