1. 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.

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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,
Arnstein, S.R. (1969), 'A ladder of participation', Journal of the American Institute of Planners, 35,

8. 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

9. 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

10. 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

11. 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)

12. 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

13. 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

14. 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

15. 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 p (Howie JGR et al.). This can be read on the web at
School of Medicine, Health Policy and Practice, INSTITUTE OF HEALTH

16. 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

17. 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.