Where next for User Involvement?

Professor Jonathan Tritter

Chief Executive NHS Centre for Involvement

Public Involvement in the NHS: Is LINks the way ForwardFriend’s Meeting House, Coventry

25 June 2007

• The evolution of Involvement in UK Health Policy

• Thinking about Involvement

• Introducing the NHS Centre for Involvement– How are we organised and what do we do

• The Future of Patient and Public in England– PPI in Commissioning – Local Involvement Networks

Outline

Patient and Public Involvement in the NHS

Long history

1974 - Establishment of Community Health Councils

1992 - Citizen’ Charter Initiative

1999 - Patient and Public Involvement in the New NHS

2001 - The Health and Social Care Act 2001

2002 - NHS Reform and Health Care Professionals Act 2002

2006 - The Local Government and Public Involvement in Health Bill

Public Involvement in the NHS

Does User = Patient, Carer, Consumer, Customer or Citizen?

For the UK Government

User Involvement = Patient and Public Involvement

“This is a package of radical reform. It will enhance and encourage the involvement of citizens in redesigning the health service from the patient’s point of view.”

(Department of Health, 2000: 95)

Choice and Involvement? Foundation Trusts

Why involve users?

• Legitimacy– Of approach– Funding and organisation

• 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

Conceptualising user involvement

• User participation in decisions about treatment and care

• User involvement in service development• Planning and design of services• Commissioning

• User evaluation of service provision• Public Accountability rather than Patient Satisfaction• Regulation

• User involvement in teaching

• User involvement in research• At all stages of the research cycle

• Marketisation– Individualisation rather than collectivisation– Customer surveys not involvement– Private sector

• Cream skimming• Undermining risk pooling

• Tokenism– Capture by medical elite– Capture by managerial elite– Capture by local political elite

• Apathy or unwillingness to be ‘involved’

• Tensions between ‘choice’ and ‘involvement’

Potential Pitfalls of User Involvement

• PPI accepted practice

• Lack of clarity about how to do it– about who to involve

• Direct and Indirect involvement– Direct: people playing a part in making decisions– Indirect: people as source of experience, ideas and

information

• Need to focus on Impact– Making a difference– Evidence that PPI has had an influence on practice

Involvement to Impact

• Response to an European-wide Tender

• Successful Consortium• University of Warwick• LMTA - an alliance for health• Centre for Public Scrutiny

• The Centre announced on 24 May 2006• The Health Minister Rosie Winterton

• Start of set-up phase from 1 June 2006

• Formal launch 28 November 2006

• Funded for three years in the first instance

The NHS Centre for Involvement

• Supporting NHS staff and organisations across England to engage with patients and the public more effectively and implement change based on their information

• Working with NHS organisations and staff to integrate user involvement systems into everyday working• Fulfilling obligations under Section 11 Health and

Social Care Act 2001• (and its successor)

• Working with the Healthcare Commission• The Regulator on how to inspect compliance

What the Centre does

• Research and Best Practice– Gathering and generating evidence– Methodological development

• Organisational Development– Working with NHS Organisations to build PPI Systems– Meeting Core Standard 17

• Learning and Support– Identifying and responding to needs– Curriculum development– Identification and accreditation of providers

• The People Bank

• Patient-Citizen Exchange & PPI Professionals Exchange

Organising our Work

• Local Involvement Networks (LINks)– Voluntary and Community organisations

– Health and Social Care

• Patient and public involvement in commissioning– Practice Based Commissioning

• Increased commissioning from non-NHS providers

• Increased Patient Choice

Horizon Scanning: UK Policy Challenges

• Local Involvement Networks (LINks)– Promoting and supporting the involvement of

people in the commissioning, provision and scrutiny of local care services

– Obtaining the views of people about their needs for, and their experiences of local care services

– Making the views known through reports and recommendations about how local care services might be improved

(Part 11 Section 153 subsection 2)

Local Government and Public Involvement in Health Bill (2006)

• 2nd Reading in House of Lords– In to committee 21 June

• DH response to Parliamentary Health Select Committee Inquiry in to PPI 11 June 2007

• Expected Royal Assent October 2007

• LINks Operational from 1 April 2008– Host organisations commissioned for three

years from 1 April 2008

Local Government and Public Involvement in Health Bill (2006)

• LINks will assist NHS provider organisations to engage with the local community to improve services

• LINks will set their own agenda and focus on issues of concern to local people and seek to influence change

• LINks will be integral in commissioning decisions to ensure they reflect the views of local people

• National Voices

• National LINks

How will LINks Work?

• Established in all Local Authority who commission social services– 153 across England

• LINks will be supported by a Host organisation– Contracted by Local Authority– Commission/deliver tailored programme of learning

and support

• New money from DH (circa £100k/year)– Formula based– Pooling resources with LA involvement activities on

social services

How will LINks work?

LINks and accountability

• Accounting to the local community– To the regulator(s)– To local providers– To local commissioners

• Accounting for the views of local people– Priorities for local services– Evaluation of local services– Responsiveness by local services

PPI and Commissioning

• PPI at all points in the commissioning cycle– Plan– Contract– Monitor– Revise

• Commissioning along Patient Pathways

• PPI in Practice Based Commissioning– Opportunities– Problems

• 9 Pilot and Early Adopter Sites across the country

• Capturing the Learning– Ongoing dissemination through NCI website– Initial report of learning early July 2007

• Working with:– the Healthcare Commission, – the Commission for Patient and Public Involvement in

Health– Department of Health (and others)

Piloting LINks

Governance arrangements to balance stakeholders– Wariness and mistrust of Local Authorities– Establishing set of ‘ground rules’ for behaviour and the

consequences of inappropriate behaviour

• Geography is important– Community profiling and mapping the voluntary sector

central to effective set up

• LINks annual reports should be analysed to identify regional and national issues – Feedback to individual LINks

• Need for clarity and control of payments to individual LINks members

Piloting LINks: Early Learning

• Little attention to collaboration between LINks– Particular concern for Ambulance Services

• Little attention to defining success criteria or measurement of impact

• Procurement of a Host– Some work on pooling resources for Host to cover

three LINks areas

• Limited work on how a LINk identifies an issue and engages with the topic

Piloting LINks: Early Learning

“One of the key roles of civil society organizations is to hold health care providers as well as governments accountable for what they do and how they do it….yet without mechanisms enabling people to hold officials accountable, stewardship may falter. To enable effective pressure for accountability, accurate information about health and health systems performance is required throughout civil society.” (WHO, 2003: 126)

• Modelling and facilitating transformation• Building capacity • Supporting a sustainable approach to change

• Contact us at: nhscentreforinvolvement@warwick.ac.uk

• See our website: www.nhscentreforinvolvement.nhs.uk

The NHS Centre for Involvement