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.auwww.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)