The Role of Consumers in Guidelines Development

1. The Role of Consumers in Guidelines Development Kay Dickersin, MA, PhD December 10, 2012

2. Why involve patients in guideline development? • Key questions are informed by issues that matter to patients • Patient–centered outcomes are part of the key questions • Patient preferences are included as relevant in guidelines • The evidence addressing patient concerns is reflected in the guideline

3. Questions that need answering • Which type of patient/consumer? • Individuals who share personal experience of a condition • Consumer advocates who bring the shared experience related to the condition of their constituencies • Consumer advocates with no experience of the condition • Who do consumers represent? • Ways to select the consumers/patients? • What level of training is needed? • For patients/consumers? • For clinicians working with the consumers?

4. Types of consumers involved in systematic reviews • Patients with personal experience of the target condition • Patients with no personal experience of the target condition • Patient advocates • Spouses, families, caregivers • Members of the public • Consumer representatives • Professionals who have worked with patients with the target condition Kreis J. 2012 Health Expectations

5. Patient involvement in guidelines • CPG organizations are using many different methods to involve the public in guideline development • Paucity of rigorous process and impact evaluations • Greater international collaboration needed to strengthen existing knowledge, address barriers • Patient and public organizations need to be involved in discussions of their roles in CPG development Boivin 2010 Qual Saf Health Care

6. G-I-N PUBLIC Toolkit Methods to involve patients and the public • Consultation – information from patients and the pubic • Comment on draft scope, draft guideline • Open (public posting) or targeted (by invitation) • Participation – exchange of information between the public and guideline developers • Communication – information from guidelines developers to patients and the public

7. Consumer involvement in systematic reviews Kreis J. 2012 Health Expectations

8. Points for consumers involvement in systematic reviews Author team Advisory Group • Topic suggestions • Priority setting • Development of key questions • Peer review draft protocol • Comment on key questions • Peer review of draft systematic review • Public comment on draft review • Develop consumer-friendly information • Focus groups • Testing • Development team Kreis J. 2012 Health Expectations

9. Scientist responding “yes” to pre- & post-questions about having 2 consumers on every study section – DoD grants Source: Andejeski et al 2002 J Women’s Health

10. National coalition of 37 health advocacy organizations • Member organizations must not be dominated by commercial interests • Mission: To improve decision-making about health

11. Formed in 2003 • AHRQ funding (2003-2012) • 2-part impetus 1) Consumer groups should be able to: • Understand and translate research findings to their constituencies • Make use of best evidence in health care decision-making 2) Consumer groups need a professional society and regular networking and educational opportunities

12. CUE’s tasks • Build a critical mass of US-based consumer advocates trained to use and communicate the essential elements of EBHC; • Increase partnerships between CUE and decisionmakers; • Provide online and in-person training on EBHC and critical appraisal; • Provide a forum for communication and methodological consultation; • Contribute to improving the quality of healthcare; and • Increase awareness of, involvement in and contribution to the work of the Cochrane Collaboration and other EBHC organizations.

13. Build a critical mass – Web presence www.us.cochrane.org

14. Increase partnerships - Clearinghouse for groups seeking consumers Clearinghouse • Advocates are asked to contribute at many levels • Research project teams • Advisory boards • Guidelines panels • FDA consumer input • Grant review committees • Cochrane: • Systematic review peer review • Plain language summaries

15. Increase partnerships - Clearinghouse for • groups seeking consumers • Guidelines panels 2011-2012 • Amer. Acad. Otolaryngology - Head and Neck • Surgery • Improving Voice Outcomes Following Thyroid Surgery • Tonsillectomy in Children • Sudden Hearing Loss • Tympanostomy Tubes in Children • Bell’s Palsy • Tympanostomy review • Amer. Coll. Chest Physicians • Lung cancer screening • Cough • Pulmonary hypertension

16. Increase partnerships - Clearinghouse for • groups seeking consumers (cont’d) • Guidelines survey (2012) of CUE members • Amer. Acad. Orthopedic Surgeons • Surgical Management of Osteoarthritis of the Knee

17. Online resources – Courses free of charge us.cochrane.org

18. Online resources- Slidecasts

19. In-person meetings CUE Annual Membership Meetings

20. 2011 CUE Annual Meeting Slidecasts on our CUE website

21. In-person meetings Annual workshops at Cochrane Colloquia “How to ask an answerable question” • Goal: Greater impact of priority questions posed by the public

22. Online resources - CLEO http://us.cochrane.org/consumers-united-evidence-based-healthcare-cue

23. Forum for communication CUE Facebook Group • Forum for posting resources • Forum for discussion among members • Allows for interaction with non-CUE members

24. Challenges for involving consumersin guidelines development • Funding – Neither the consumer groups nor CUE have their own funding for this activity • Level of industry funding – what is appropriate for member groups? • Each member group has its own mission, and mission is highest priority • Not all societies prepare and run guidelines panels the same way