Frequently asked questions about Arthritis Consumer Experts

Q: Who is "ACE"?
A: “ACE” is the acronym for Arthritis Consumer Experts, a Canadian registered company operating as a non-profit organization. All of ACE’s programming and activities are free to people with arthritis and the public. It was founded 20 years ago by Cheryl Koehn, a person living with rheumatoid arthritis, and today, is led by its membership and subscribers, expert scientific and medical advisory board and a senior team of health education and communication specialists.

Arthritis Consumer Experts is Canada’s largest national arthritis patient-led organization and serves people living with all forms of arthritis by helping them take learn about and take control of their disease to improve their quality of life

Q: What is JointHealth™?
A: JointHealth™ is the name of the on-line, in print and in person education and information programs created and delivered by ACE. JointHealth™ programs provide the latest research-based information translated in French and English to people living with arthritis, their family members and friends and health policy decision-makers.

Q: What does ACE do?
A: ACE is a leading provider of research-based education and information specific to arthritis. Our programs and services help educate, train, mentor and lead people with arthritis who wish to take an active role in arthritis decision-making processes in Canada. Our objectives include:
  • To provide research-based education and information to people with arthritis to help power them to take control of their disease and improve their quality of life;
  • To help people with arthritis participate in arthritis research decision-making;
  • To partner with researchers and research organizations to advance the basic, clinical and health services sciences and translate the knowledge generated by them to people with arthritis and the public;
  • To work in coalition with people with arthritis and other health care consumers and organizations to effect evidence-based reform of Canada's health care policies, including federal and provincial government patient input processes.

Q: What are Cheryl Koehn's background and qualifications?
A: Cheryl Koehn was diagnosed with rheumatoid arthritis in 1990 and has put both her business and arthritis experience to work for people with arthritis. Koehn shares her knowledge, leadership and motivation with arthritis consumers, arthritis organizations and governments across North America. Her credentials directly related to arthritis education and advocacy include:
  • Former director and fund development committee chair of The Arthritis Society, BC and Yukon Division;
  • Served on management and research and development committees of the federally funded Network of Centres of Excellence Canadian Arthritis Network (CAN);
  • Co-author of Rheumatoid Arthritis: PLAN TO WIN (Oxford University Press USA, January 2002);
  • Managed a successful marketing and communications consultancy
  • She currently serves on the following select committees:
    • Canadian Institutes of Health Research Standing Committee on Ethics (Patient Representative);
    • SPOR Evidence Alliance (Steering Committee Member and Co-Chair Knowledge Translation Committee);
    • PRECISION (Research Network, Consumer Core Lead);
    • EQUIP-TJR (Research Team, Co-Investigator);
    • Citizen Science (BC SUPPORT Unit Research Project, Member).

Q: Who reviews ACE’s communications materials and programming for scientific accuracy?
A: The content for ACE’s patient education and information programs and materials derive from the research literature and are reviewed and approved by its Advisory Board comprised of leading scientific and medical experts from Arthritis Research Canada and people living with arthritis.

Q: What makes ACE unique from other arthritis not-for-profit organizations in Canada?
A: ACE is led by people with arthritis and expert advisors in its work, every day, all day. Its unique structure provides operational autonomy ensuring the work it does is relevant, timely and entirely focussed on improving the arthritis experience for those living with the disease. ACE practices full transparency and discloses all funding sources in all its activities, in print, on-line and during public presentations.

ACE also supports and enhances the efforts of the Canadian arthritis community through its membership in the Arthritis Alliance of Canada.

Q: From whom does ACE receive funding?
A: Since its founding in 1997, ACE has received annual funding from grants through peer-reviewed research projects, pharmaceutical companies making a profit from the illness experienced by people living with arthritis, and unsolicited donations from its community members from across Canada.

ACE fully discloses all funding sources in all its activities and at all its public presentations. A list of ACE’s funding sources over the past 12 months can be found here.

Q: Does ACE promote or "brand" any company or product?
No. ACE does not promote any "brand", product or program on any of its materials or its web site, or during any of its educational programs or activities.

ACE identifies the source of all materials or documents used.

Please visit our Guiding Principles for further information.

Q: Why does ACE accept unrestricted grants from for-profit organizations?
A: ACE maintains that health care organizations, especially those which stand to gain from the ill health of others, have a moral responsibility to actively participate in endeavours seeking to improve health care delivery.

For its past 20 years, ACE has consistently honored a commitment to its members and subscribers, academic and healthcare professional colleagues, collaborators, government and the public that its work is free from the influence of its funders.

To inform ACE employees and our stakeholders, members, subscribers that we will operate our organization with integrity and abide by the highest standards of lawful and ethical behaviour, ACE has adopted this strict set of guiding principles:
  • ACE requests grants from private and public organizations to support its core program and plans and allocates those funds free from influence;
  • ACE discloses all funding sources in all its activities;
  • ACE does not promote any "brand", product or program on any of its materials or its web site, or during any of its educational programs or activities.
  • ACE employees do not receive equity interest or personal "in-kind" support of any kind from any health-related organization;
  • ACE identifies the source of all materials or documents used;
  • ACE develops positions on health policy, products or services in collaboration with people living with arthritis, academic research community, health care providers and governments free from concern or constraint of its funders or other organizations;
  • ACE employees do not engage in personal social activities with its funders;
  • Chery Koehn does not own stock or any financial interest in any of its private or public funders.