Getting truly effective consumer involvement

1. Getting truly effective consumer involvement Shared decision-making workshop October 2014

2. Effective consumer involvement • Involving consumers in the development of decision aids is best done through all stages: • Developmental • Promotion and use • Evaluation of their effectiveness

3. Effective consumer involvement • The best way to explain this is with an example: • Inside Radiology (RANZCR) • Making decisions on tests and treatment (NHMRC) • Health literacy project (ACSQHC) • NPS Medicinewise

4. Effective consumer Involvement • Focus groups to explore what was important to consumers when being offered a diagnostic test • This was used to create a template for the presentation of information about each test.

5. Effective consumer involvement • The headings are: • What is… • How do I prepare for… • What happens during… • Are there any after effect… • How long does xx take • What are the risks of…e.g. contrast medium, buscopan • What are the benefits of… • Who does xx… • Where is xx done • When can I expect results • Are there alternative tests • What if I have e.g. a stoma

6. Effective consumer involvement • Next step was the production of each information sheet by the relevant health professionals • Followed by re-writing them in plain English without sacrificing their accuracy • Team of editors included 2 consumers • An iterative process to ensure the quality of the end product. See the results on www.insideradiology.com.au

7. Effective consumer involvement Promotion and use: mainly done by ANZCR but also by CIA to all its members promoted through NPS statistics worth looking at!

8. Effective consumer involvement Evaluation: There are numerous ways to include consumers in evaluations e.g. surveys and qualitative process evaluations or reviews of materials. In Consumer “Responses to Online Decision Aids for 3 Preference sensitive Health Problems (J Participat. Med 2013; 5) there is an evaluation completed by Survey Monkey using consumer friendly domains such as : I learned something I didn’t already know I understand what options are available to me I am clear about which benefits and side effects matter most to me I am confident I can make a decision The results demonstrated that online decision aids were more effective for in for learning and decision-making than was online information only. A limitation of the study was that there was no control group.

9. Effective consumer involvement • In conclusion • Consumer involvement must be part of a budget and part of any overall proposal; • Decision aids must be consumer-friendly; • Health literacy must be addressed in the design of decision aids: “More attention to the needs of patients with lower health literacy is indicated to ensure that PtDAs are appropriate for lower as well as higher health literacy patients.” • McCaffrey et al, Addressing health literacy in patient decision aids BMC Medical informatics and Decision-Making BMC 2013, 13 (suppl)