Patient Engagement in Canadian Clinical Guidelines Development

Findings of an online survey of more than 1100 Canadian Osteoporosis Patient Network members will be reflected in new guidelines to be published later this year.

Mr. Larry Funnell, a long time Osteoporosis Canada volunteer, and Dr. Suzanne Morin, a member of Osteoporosis Canada’s Scientific Advisory Council, presented “Patient Engagement in Clinical Guidelines Development : Input from >1000 Members of the Canadian Osteoporosis Patient Network” at the IOF-ESCEO World Congress (WCO-IOF-ESCEO 2019) in Paris, France.

To ensure that the issues important to those who live with the disease are accounted for in the new Osteoporosis Canada’s Clinical Practice Guidelines, an online patient survey was conducted in spring 2018 and sent to members of COPN (Canadian Osteoporosis Patient Network). Over 1100 members completed the on-line survey.

Some of the findings from the survey included:

  • Preserving quality of life and well-being as the most important treatment outcome for patients.
  • More than ⅓ want updated guidelines related to pharmacotherapy, such as benefits and potential side effect and drug holidays.
  • Many stressed the importance of including recommendations on exercise and physical activities that are safe and effective for those with osteoporosis.

All of these, and many more survey responses on a full range of issues that also include risk assessment and nutrition, will help the interdisciplinary working group of clinicians, researchers and patients ensure Osteoporosis Canada’s Clinical Practice Guidelines reflect the wants and needs of patients.

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