Work Package 3

1. Work Package 3 Patient and public focused strategies for communicating evidence-based recommendations Patient and public focused strategies for communicating evidence-based recommendations - February 2013, Confidential

2. Not an easy sell If 100 people like you are given no treatment for five years, 92 will live and 8 will die. Whether you’re one of the 92 or one of the 8 is anybody’s guess. Then, if 100 people like you take this drug every day for five years, 95 will live and 5 will die. Again, I’ve no idea if you’re in the lucky 95 or the unlucky 5. Did you get all that? Maybe I’d better open the window. Hammond, Phil (2010). Sex, Sleep or Scrabble: Seriously Funny Answers to Life's Quirkiest Queries (p. 29). B&W Publishing. Patient and public focused strategies for communicating evidence-based recommendations – February 2013. Confidential.

3. Understanding Average reading age tends not to be too high… Patient and public focused strategies for communicating evidence-based recommendations - February 2013, Confidential

4. Varied audience • Affected by: • Level of literacy • Level of numeracy • General level of education • Cultural norms • Language • Disability (hearing, vision) • Etc. Patient and public focused strategies for communicating evidence-based recommendations - February 2013, Confidential

5. Crowded marketplace • In most areas involving chronic conditions, there is already a lot of patient information available. • What is our unique selling point (USP)? • That we are evidence / guideline based. • Does not always carry a lot of weight compared to other considerations. • Particular issue for screening. • No guidelines available in areas we considered. • Lots of pre-existing material. • Policy / public health issue rather than individual patient issue? Patient and public focused strategies for communicating evidence-based recommendations – February 2013, Confidential

6. WP3 tasks and progress • Identify current understanding and knowledge of evidence-based guidelines among guideline users • Surveys of guideline users completed. • Reveal limitations in public understanding of clinical practice guidelines. • Survey response too small to justify publication • Identify potential issues that should be addressed in getting information through to our target audience • Workshop at GIN Conference, August 2012. • Focus groups with patients (4) • Systematic review Patient and public focused strategies for communicating evidence-based recommendations - February 2013, Confidential

7. WP3 tasks and progress • Stakeholder group circulated with proposals for user testing • Including example ISoF table • Feedback clear that stakeholders did not think patients are ready for something so apparently complex • Particular concern that we may be focusing on one instance of care, when a whole pathway needs to be considered as well as patient’s family / social context. • Feedback incorporated into user testing materials Patient and public focused strategies for communicating evidence-based recommendations - February 2013, Confidential,

8. WP3 tasks and progress • User testing started • Different approaches to diabetes, depression, obesity • Initial round of user groups conducted • 14 further groups planned in conjunction with Scottish Health Council • Various geographic settings • Various social / cultural groups • Hope to get materials translated and tested in other countries • To be discussed at this meeting Patient and public focused strategies for communicating evidence-based recommendations – February 2013, Confidential