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

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 2

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? 3

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 4 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 5 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 6

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

8. Points for consumers involvement in systematic reviews 8 Kreis J. 2012 Health Expectations 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 Author team Advisory Group

9. Scientist responding “yes” to pre- & post- questions about having 2 consumers on every study section – DoD grants 9 QuestionPrePost Is it beneficial to have consumers on panels?69%84% Consumers add an important perspective72%77% There are drawbacks55%25% Process takes more time43%15% Consumers make irrelevant comments38%22% 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 10

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 11

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. 12

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

14. 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 Increase partnerships - Clearinghouse for groups seeking consumers

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 18

19. In-person meetings 19 CUE Annual Membership Meetings

20. 2011 CUE Annual Meeting 20 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. http://us.cochrane.org/consumers-united-evidence-based- healthcare-cue Online resources - CLEO

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

24. Challenges for involving consumers in guidelines development 24 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