The role of the public in quality assurance for family practice Amanda Howe MA MEd MD FRCGP Professor of Primary Care University of East Anglia, Norwich, U.K.

Norfolk – not far from Europe ... NORWICH EAST OF CAMBRIDGE Close to BELGIUM MED SCHOOL OPENED 2002 School of Medicine, Health Policy and Practice, University of EAST ANGLIA

Outline give an overview from current developments in U.K. show specific policy examples from service and research evaluations share theoretical and practical frameworks for evaluating approaches to public involvement examine ways in which public involvement can be measured and evaluated for its effectiveness in improving quality at practice level

Concepts and definitions (1) ‘Quality’ Evaluation of a service or relationship Involves making comparisons / judgements People may value differently ‘Comes at a price’, e.g. offset against quantity Quality indicators – specific measurable elements of practice that can be used to assess quality Quality assurance – implies a ‘guarantee’ that the public’s expectations will be met to a ‘good enough’ standard, and that improvements will occur

Concepts and definitions (2) ‘The public’ Anyone who is not an expert, employee, or has other involvement in the relevant service Those who choose to put their views Those sampled to represent others In health services context Not health professionals or managers Those speaking on behalf of patients Patients themselves (cf users, consumers, clients) Those who have volunteered to play certain roles

Rationale for public involvement “Engaging and listening to the public will provide responsive services in keeping with local needs encourage staff to look at service delivery from the patient perspective improve accountability and openness encourage listening, learning and improving as key features of the organisational culture The key aims of the strategy must therefore be to: Enable patients and their carers to be fully informed about treatment, condition and care Support patient choice and informed decision making Encourage a lay perspective in service planning Help health professionals to be more responsive to the needs and preference of service users”. PPI NNUH Patient and Public Involvement Strategy, Norfolk University Teaching Hospital, 2004

Framework – ‘Arnstein’s ladder’ Empowerment: true power sharing, giving autonomy to the previously dependent Participation: direct - in which the people actively attempt to influence policy making by direct interaction with the decision makers indirect - includes other mechanisms by which people take part in the democratic process, e.g. voting, affiliating to political party that best represents their views on health care delivery Consumer Satisfaction: involve users in the process of evaluation of the services they receive Consultation: user opinions sought on issues related to their health services Health Education: aims to change attitudes and behaviour as well as increasing knowledge. Information: aims to increase knowledge - flow mostly one way from the health care provider to the health care user. Arnstein, S.R. (1969), 'A ladder of participation', Journal of the American Institute of Planners, 35, 216-224. Arnstein, S.R. (1969), 'A ladder of participation', Journal of the American Institute of Planners, 35, 216-224.

Methods of evaluation used Questionnaires and surveys Interviews / focus groups Plus for research evaluation of impacts :- Meetings observation Numbers and profile of those recruited Time charts / resource use Evidence of impacts in the organisation / on services Evidence of new roles played by lay people * examples mostly at organisational level Nb issue re ‘representativeness’ Robert, G., Hardacre, J., Locock, L. Bate, P. & Glasby, J. (2003). Redesigning mental health services: lessons on user involvement from the Mental Health Collaborative. Health Expectations, 6. School of Medicine, Health Policy and Practice, INSTITUTE OF HEALTH

Case 1: Primary Care Trusts “PCTs are required, under section 11 of the Health and Social Care Act 2001, to make arrangements to involve and consult patients and the public in: - Planning services Developing and considering proposals for changes in the way those services are provided Decisions to be made that affect how those services operate Strengthening accountability: involving patients and the public”, sets out: What the duty of Public and Patient Involvement (PPI) means for PCTs How to do a baseline assessment How to construct a patient and public involvement strategy How to integrate PPI into the planning process The importance of working in partnerships Managing the consultation process, eg with specific groups, hard to reach groups, staff, and dealing with conflict The overall scheme of PPI systems in the New NHS”. Evaluation of public involvement in Primary Care Groups in London Will Anderson, Dominique Florin, Lesley Mountford and Steve Gillam, The King's Fund 2002 Evaluation of public involvement in Primary Care Groups in London Will Anderson, Dominique Florin, Lesley Mountford and Steve Gillam, The King's Fund 2002

Early findings NHS organisations are not designed to learn from public voices. Public involvement work will achieve little if investment in methods of involvement is not matched by attention to internal mechanisms of learning and change. Formal decision-making processes only take public views seriously if there are strong advocates for those views within them. However, organisations and their members and officers are open to influence in many other informal ways, which public voices should exploit. Whatever the approach, change is only likely if public involvement work connects in some way to existing organisational interests, where change is already on the agenda. School of Medicine, Health Policy and Practice, INSTITUTE OF HEALTH

Case 2 : the Expert Patient Programme Aims: Promote awareness and create an expectation that patient expertise is a central component in the delivery of care to people with chronic illness Establish a programme for developing user-led self-management courses Integrate the EPP into existing NHS provision of health care across UK, and provide organisational support Promote health professionals’ knowledge and understanding about the benefits for them as well as for patients of user-led self-management programmes. Work closely with the leading patient representative bodies and main health professional bodies to provide consistency Assessing the Process of Embedding EPP in the NHS Preliminary Survey of PCT Pilot Sites Authors: Anne Kennedy Claire Gately Anne Rogers and EPP Evaluation Team National Primary Care Research and Development Centre January 2004 Assessing the Process of Embedding EPP in the NHS (NCPCRD, 2004)

Early findings “Finding sufficient participants to undertake the self-management courses was problematic, and remains the biggest challenge for the pilot phase” “More than one day a week is devoted to dealing with EPP. An assistant to the PCT lead deals with phone enquiries from patients, explains the EPP course and maintains a database – they currently have a waiting list of 30 patients, and they have six voluntary tutors so are developing flexibility...” “Lack of experience of dealing with patients – some respondents are not used to dealing directly with participants and discussing health and illness matters” Assessing the Process of Embedding EPP in the NHS Preliminary Survey of PCT Pilot Sites Authors: Anne Kennedy Claire Gately Anne Rogers and EPP Evaluation Team National Primary Care Research and Development Centre January 2004 School of Medicine, Health Policy and Practice, INSTITUTE OF HEALTH

Other national examples National Patient Safety Agency – safety as one parameter of quality (along with access, effectiveness, and satisfaction) - anonymous reporting of lapses and adverse events Strong public input through scoping, panel membership, media SURESTART – community based early intervention into deprived families Health promotion R&D user involvement ‘essential’ for most funders n.b. PROBLEM – of national policy biasing objective evaluation School of Medicine, Health Policy and Practice, INSTITUTE OF HEALTH

Evidence of outcomes A lot of activity but ... Research into effectiveness of lay involvement 3 site case study Allowing stakeholders to explore their own definitions of measures of ‘effectiveness’ Stakeholder interviews, focus groups, observation Including organisational leads, patients, and community interface Results ..... School of Medicine, Health Policy and Practice, INSTITUTE OF HEALTH School of Medicine, Health Policy and Practice, INSTITUTE OF HEALTH

Public involvement in quality assurance of family practice Practice level Patient surveys e.g. GPAS - achievement on seven sub-scales including access, technical care, communication, inter-personal care, trust, knowledge of the patient, and nursing care - global sum score, comparison across practices Patient participation groups Volunteers for support Consultation level CQI / PEI - operationalise ‘quality’ in terms of two principal core values of general practice, focussing on ‘patient-centredness’ and ‘holism’. OPTION – shared decision making Consultation analysis – e.g. patient centredness CARE – empathy Roland M (2000). General Practice Assessment Survey Manual (GPAS). Manchester: Safran/The Health Institute and National Primary Care Research and Development Centre. The Consultation and Relational Empathy (CARE) Measure ; development and preliminary validation and reliability of an empathy-based consultation process measure Stewart W Mercer, Margaret Maxwell, David Heaney, and Graham CM Watt. Family Practice 2004. OPTION Observing patient involvement Evaluating the extent that clinicians involve patients in decisions Glyn Elwyn, Adrian Edwards, Michel Wensing and Richard Grol Version 2: 2002 CQI - Family Practice, vol 17 p455-461 (Howie JGR et al.). This can be read on the web at www.fampract.oupjournals.org School of Medicine, Health Policy and Practice, INSTITUTE OF HEALTH

A practice checklist for public involvement in quality Does the team ....? Aim to develop a dialogue with its population and patients outside routine care Audit consultations with validated patient-led tools Survey patients on a regular basis to seek their views on aspects of service Encourage patient involvement in service, education and research Seek to include the ‘hard to reach’ Does the practice ...? Advertise opportunities for patients to play new roles Support patient groups running their own contribution Respond to feedback and demonstrate change Have an ethos of patient – centredness and self questioning Engage with community health initiatives Delegate time for members to contribute to PPI initiatives School of Medicine, Health Policy and Practice, INSTITUTE OF HEALTH

The role of the public in quality assurance for family practice Amanda Howe MA MEd MD FRCGP Professor of Primary Care University of East Anglia, Norwich, U.K.