1. Julie Hepworth EMAIL: Julie.Hepworth@qut.edu.auJulie.Hepworth@qut.edu.au 10/04/15 APS Health Psychology Conference, Sydney, 10-11 April, 2015 Patient engagement: What and who is it good for?

2. Overview Patient engagement: 1. What is it claimed to be? 2. What’s the problem? 3. What and who is it good for?

3. 1. Patient engagement: What is it claimed to be?  ‘Patient engagement’ involves disparate disciplines, health-related fields, various spaces, individuals and populations.  ’Patient engagement’ … “seems to contribute to gain better health outcomes, to enhance patient’s care and cure experience, to improve illness self-management and adherence to therapies, and to reduce care costs“ (p. 1). Reference: Barello, S., Graffigna, G. & Vegni, E. (2012). Patient engagement as an emerging challenge for healthcare services: Mapping the literature. Nursing Research and Practice, doi: 10.1155/2012/905934.  ‘Patient engagement’ adopted in:  Self-management of health conditions (eg. type 2 diabetes)  E-health tools for engagement and measurement  Patient/public participation in health service planning

4. 1. Patient engagement in policy and practice  Not an apolitical term, embedded in historical and political discourse: o Patient engagement as Participation – Ottawa Charter – “empower patients and communities to take control of their health” (WHO, 1986). o Patient engagement as Patient Activation (USA) Hibbard et al. (2007). o Patient engagement as Health Policy in UK mid 2000s onwards > Australian health policy and practice.  Involves ‘slippage’ and/or is interchangeable with ‘consumer and community participation/consultation’ (eg. IAP2).

6. 1. Is all engagement the same?  “Top down” engagement  Paternalistic engagement  Real “bottom up” engagement

7. “Top down” engagement “The health service organisation establishes mechanisms for engaging consumers and/or carers in the strategic and/or operational planning for the organisation” (p.24). Reference: Australian Commission on Safety and Quality in Health Care (ACSQHC) (September 2011), National Safety and Quality Health Service Standards, ACSQHC, Sydney.

8. Paternalistic engagement “The report [Hepatitis and liver cancer – A national strategy – USA 2010] describes poor engagement between providers of fragmented services and communities at risk of hepatitis B or C: ethnic minorities, indigenous peoples, users of illicit drugs, prison inmates, and immigrants from hepatitis B-endemic countries. As a result, opportunities for education, prevention, detection and treatment are missed”. Reference: Editorial, The Lancet, Vol. 375 Jan 16, 2010 p. 172.

9. “Bottom-up” real engagement “Although the editorial mentions engagement with migrants, prisoners, and the homeless, these populations are rarely, if ever, included in the decision- making processes, and are treated as passive individuals. Also of concern is the fact that the editorial mentions the need to make resources reach the poorest communities and most marginalised members, and yet does not mention the need to empower and work with them, or to fight the social inequity that put these communities in situations of poverty and marginalisation, of which tuberculosis is a visible consequence.” Reference: Mingote, LR, Vandevelde, W., Kumar, B, Lessem, E. (2015). Real engagement with communities, Comment on The End TB Strategy: a global rally. Lancet Respiratory Medicine, 3(1): 2.

10. Example: “Bottom up” real engagement  Patient engagement through community involvement The Aboriginal and Torres Strait Islander Community Jury Inala (Qld) Centre of Excellence in Aboriginal and Torres Strait Islander Primary Health Care – improving access to primary mental health care.  Reference: Askew, D., Bond, C. & Foley, W. (2014). Putting a human face on the researched. Evaluating the effectiveness of engaging Indigenous people in establishing health agendas. Primary Health Care Research Conference http://www.phcris.org.au/conference/2014/ http://www.phcris.org.au/conference/2014/  Hepworth et al. (2015) forthcoming publication in the International Journal for Equity in Health

11. 2. Patient engagement: What’s the problem?  IAP2 – use - none or ad hoc follow up mechanisms about patients’ input.  Dichotomy - discourse of patient engagement as an individual responsibility for health vs. real “bottom up” engagement involving processes.  Not all patients have an equal opportunity to engage. Reference: Thomson et al. (2005).

12. 3. Patient engagement: What and who is it good for? What is it good for?  Creating a dialogue among stakeholders.  Communicating different views.  Developing an agreed framework for evaluation. Who is it good for?  Governments – “informed patients”?  Health care organisations – patient satisfaction  Patients – clinical level

13. Thank you Full paper for publication in progress