1. Evaluation approaches to CDSM tools used in a Sharing Health Care Initiative Project Alison Short 1,2 Rebecca Taylor 2,, Paul Dugdale 2, Peter Nugus 1,2, David Greenfield 1 1 Centre for Clinical Governance, AIHI, UNSW 2 Centre for Health Stewardship, ANU

2. Outline of presentation 1.Overview of project and planning 2.Approaches and examples 3.Take home messages

3. Australian Government Department of Health and Ageing Evaluating the Impact of the Patient as Professional within a Network Tool to Self-Manage Chronic Disease Linked to project: Interprofessional Learning in Primary Health Care to Encourage Active Patient Self- Management of Chronic Disease Health professionals Consumers Community organizations Project Overview

4. Aims 1.To evaluate the IPL and community-of-practice/ networking outcomes of professionals, including the patient-as-professional 2. To investigate the use of chronic disease management (CDSM) tools 3.To investigate the health literacy of the patient-as- professional Project Overview

5. 1.Finding the relevant information 2.Exploring the gaps and how to respond to them 3.Engaging in discussion and consultation 4.Undertaking project planning 5.Implementation & results 6.Feedback and writing up Project focus

6. Project planning (1)

7. Project planning (2)

8. 1.Learning from literature and other researchers 2.Process evaluation 3.Exploring the consumers perspectives 4.Exploring staff perspectives 5.National surveys 6.Feedback to stakeholders Summary of approaches

9. Learning from literature & others What is health literacy? 1. Basic/functional literacy 2. Communicative/interactive literacy 3. Critical health literacy References : Nutbeam, D. (2000). Health literacy as a public health goal: A challenge for contemporary health education and communication strategies in the 21st century. Health Promotion International, 15, (3) 259-267. Peerson, A. & Saunders, M. (2009). Health literacy revisited: What do we mean and why does it matter? Health Promotion International, 24 (3), 285-296. Adams, R.J. (2010). Improving health outcomes with better patient understanding and education. Risk Management and Healthcare Policy, 3, 61-72.

10. Process evaluation Observation, field notes attendance at relevant events Follow-up interviews and focus groups Review of relevant written materials

11. What is the Stanford Program? Run in the ACT as the Living a Healthy Life with Long-term Conditions course. 2 ½ hours a week for 6 weeks People of all ages with a condition lasting longer than 6 months are encouraged to attend Program is run by a health professional and a peer leader Exploring consumer perspectives

12. Methods Follow-up with people who had attended the Living a Healthy Life with Long-term Conditions course: 158 letters (Feb09-Aug10); 53 responses (34%) 4 focus groups, 8 interviews 33 participants (M=9, F=24), including 5 carers Age range: 37-80yrs (average=59.2, median=61) Range of chronic diseases and complex care needs Exploring consumer perspectives

13. What is it like to find the information you need to manage chronic disease? Written? Verbal? Other? How do you use this information in discussion and interaction with others? How do you tell what is good information, and how do you use it to make a difference for yourself and for others? What do you think needs to change, to support understanding and information exchange about self- managing chronic disease? The role of community groups? Advocacy for change? Exploring consumer perspectives Health literacy questions...

14. Exploring consumer perspectives Methods Participants were asked about their health literacy 11 interviews and 7 focus groups 50 people with chronic disease and 5 carers Aged 36-83 years 17 males and 38 females Data transcribed and analysed thematically by three researchers

15. Deciding which CDSM Tool to Use: Methods Semi-structured interviews with Goulburn Valley Health clinicians working in the field of CDSM Participants 6 clinicians (manager CDSM, social worker, allied health assistant, psychologist, naturopath and physiotherapist) Length of time worked in self-management: 6 months-4 years All participants had completed health coaching training 3 participants were Stanford Program leaders 2 participants were trained in the Flinders Program Exploring staff perspectives

16. National survey Self-Management Tools Used in Australia Methods 1.Development of a survey to gain information about the chronic disease self-management tools used 2.Pilot testing of the survey 3.Distribution of the survey to attendees at the Australian Disease Management Association 6 th Annual National Disease Management Conference pre-conference workshop

17. Feedback to stakeholders Methods Key project stakeholders interviews Semi-structured interview guide 45-60 minutes, convenient location Six interviews Survey data from Health Expo 2010 46 completed questionnaires Community members (34%); health professionals (32%)

18. Expectations about setting up a network need to be flexible, may not be as clearly defined as one would like Challenges need to be addressed, e.g. organization, staffing, financial, policy support, engagement of stakeholders and sustainability. Network needs to work from foundations of IPL, a multidisciplinary approach, working together. Need to hold events as a focus and to promote networking activity Needs to be a clear driver, or driving group, and adequate resources located for this. Feedback to stakeholders A collaborative community CDSM network

19. Know your context and its particular needs or limits Plan well ahead, and in considerable detail Make best use of existing opportunities, such as groups already gathered, such as for focus groups Develop semi-structured questionnaires with an eye on the literature Network and collaborate across health, academic, community organizations and consumers About evaluation: Take home messages (1)

20. Revise and revise written materials – use a wide range of team members Allow sufficient time for tasks, e.g. ethics & recruitment Where possible, engage with others to help gather data etc. Reassess plans of a regular basis to check that it is still realistic, and if necessary make changes Take findings back to stakeholders About evaluation: Take home messages (2)

21. Enjoy evaluating!