Assessing methods of community engagement in health care Professor Jonathan Tritter Special Advisor on Involvement Managing Resources and Engaging Users Evidence and Experience from Policing and Health Care Edinburgh 5 December 2008

What am I going to talk about? What do we mean by user involvement? Conceptualising involvement Forms of involvement Why involve users? Pitfalls of involvement Measuring dimensions of involvement Reflections

What is User Involvement Ways in which service users can draw on their experience and members of the public can apply their priorities to the evaluation, development, organisation and delivery of health services Buying a linear accelerator

Involvement ≠ Empowerment ”The cumulative effects of activities which have the initial” purpose of sensitising service delivery to user needs and preferences may have lasting consequences in increasing user empowerment with involvement” (Grand 1997: 124)

Conceptualising user involvement User involvement in decisions about individual services User involvement in service development Planning and Commissioning services User evaluation of service provision Regulation and Public Accountability not satisfaction surveys User involvement in teaching User involvement in research At all stages of the research cycle

Forms of User Involvement Direct User Involvement –Users play a role in making decisions Indirect User Involvement –Users as a source of information which influences decisions Vast majority of user involvement in health is Indirect –Relates to methods for involving users –Power, knowledge and resistance

Forms of User Involvement Individual and Collective Involvement –Personal service decision –Feedback on a leaflet from a community support group Proactive and Reactive Involvement –Raising drug prescription availability –Feeding in to a consultation on closing a swimming pool One-off or Continuous Involvement –Particular involvement activity –Building relationships within a system of involvement

Why involve users? Legitimacy –Of decision –Lessen conflict and resistance to change Relevance –Different kinds of questions –Focus on process and experience not just outcomes Participation –Support, Co-production and Compliance Impact –Efficiency and effectiveness of care –More acceptable patient pathway

Potential Pitfalls of Involvement Issues of diversity –The usual suspects –Grinding an axe –Unvoiced, unheard, greatest need No systems –Tick box –One-off exercise with no follow up –Paternalism –Not acting on involvement No evaluation

Potential Pitfalls of Involvement Apathy or unwillingness to be ‘involved Lack of clarity in user involvement activities Aims must relate to type of involvement Matching methods to type of involvement Different people for distinct forms of involvement

The Challenge of Measuring Involvement Does involvement have any impact? Direct Impacts An alteration to the organisation of the service An alteration to the array of services provided An alteration to the quality of the service Indirect Impacts Expertise/knowledge of participants Expertise/knowledge of managers responsible for the service Expertise/knowledge of those delivering the service Relationship between actors in the process

The Challenge of Measuring Involvement: Does involvement have any impact? Quality of the Process Types of involvement methods used Types of dissemination of information about process and substantive issues Number of involved individuals Types of people - diversity Number of involved groups or NGOs

Reflections Involvement is a process not an activity –Learn through doing Involvement is predicated on collective not individual benefit –The centrality of the co-production of public value Changing the ‘culture’ of the public sector organisations –Relationships between users and providers –A different form of partnership The unvoiced and uninvolved –Not a response to democratic deficit