Evolving views of service users in health care Vikki Entwistle Professor of Values in Health Care For SIPR/SDHI seminar, Edinburgh 5 December 2008

at the Universities of Dundee and St Andrews Service users

at the Universities of Dundee and St Andrews ‘Engagement’

at the Universities of Dundee and St Andrews Service users and their own care Recipients of care (Recipients and) partners

at the Universities of Dundee and St Andrews Service users and service policy Experts......and other stakeholders

at the Universities of Dundee and St Andrews WHY engage service users? WHY? Respect for persons (autonomy) Respect for citizens Improve health (wellbeing?) Improve experiences and evaluations of healthcare Make good use of available resources Which forms of engagement help with which of these?

at the Universities of Dundee and St Andrews Demanding Apathetic (Un)constructive Dependents Partners Threats How do service providers see people? Costs Outputs The hip replacement in bed 12 A headache! Mrs Jones The people for whom the service exists The people who make work difficult Citizens Stakeholders Taxpayers Voters QI allies? Potential complainants/ litigants Healthy and fit Worried well Sick and sore Patients Clients Consumers Customers (Non)-compliant (Un) grateful Capable Vulnerable Ignorant or expert

at the Universities of Dundee and St Andrews Service user engagement in current health policy “a wide consultation” “patients wanted to be partners in their care, with a say in how the NHS is run and meaningful roles in designing and delivering services...” “a mutual NHS” “We are all part-owners of the NHS. And that gives us rights and responsibilities”

at the Universities of Dundee and St Andrews ‘Involvement’ in treatment decisions Dominant view: o Inform patient about health care options and outcomes and Have patient express preferences or make decision But patients feel involved if doctors: o Are respectful, caring, facilitative o Listen and explain o Discuss options, explain recommendations o Offer safe space to query o Give patient a say

at the Universities of Dundee and St Andrews Engagement in policy/service decisions Views from service users Questionnaires, focus groups, public meetings, involvement forums... Whose views are not heard? What issues are not covered? How is the engagement experience? How are service users’ views interpreted? How are service users’ views influential? How does method of engagement affect views heard?

at the Universities of Dundee and St Andrews Some issues (1) Varied understandings of: –rationales for engagement –desirable forms of engagement Tensions between goals of engagement Plurality of service users and views Concerns about ‘correctness’ of views, fairness and ‘legitimacy’ of influence

at the Universities of Dundee and St Andrews Some issues (2) How to combine engagement with appropriate use of robust knowledge and valued expertise Context matters: need for caution when transporting principles and practices Policy/practice constraining engagement –P4P discouraging flexibility in care –Private sector involvement and lack of transparency