House of Commons - Health

Select Committee on Health Third Report

2 Patient and Public Involvement: Aims and organisations

What is patient and public involvement?

10. Patient and public involvement often appears to be a nebulous and ill-defined concept, used as an umbrella term to cover a multiplicity of interactions that patients and the public have with the NHS. Discussion of patient and public involvement often focuses on institutions dedicated to securing and promoting involvement; however, in reality, patients and the public are involved in decisions about healthcare and health services at many different levels, ranging from input into individual decisions about their treatment to large scale consultations on the broad direction of national policy and health spending. Some patient involvement is spontaneous, some is systematic; some is well resourced, some depends on the goodwill of interested parties; mechanisms for involving patients and the public are as complex as the many interlacing structures that make up the NHS. And, as Harry Cayton, the National Director for Patients and the Public at the Department of Health told us, it is all too easy to collapse all aspects of patient and public involvement into a 'single portmanteau concept' which may not be particularly helpful:

I should like to make a distinction between patient and public involvement, which I believe is a huge spectrum of activity, from how my doctor talks to me about what treatments are available and what happens to me, to how my hospital or GP practice runs its services, to the bigger question of public involvement, which is how to engage the community as a whole sometimes in difficult decisions about service patterns, reconfigurations and so on.[4]

11. Professor Celia Davies reinforced the importance of attending to the distinction between patient involvement and public involvement both in terms of the type of contribution people may want to make, and the different perspectives they will bring to bear:

One of the most important things to consider is the different dimensions of patient and public involvement. All sorts of things hide under a general umbrella. For me, one of the fundamental distinctions is between involving people as citizens in hard choice decisions, maybe in commissioning, in the policy process of government and, at the other end, involving them as service users who have had the experience and can feed something back.[5]

12. Current or recent users of the NHS may have excellent insights into the quality and design of a particular service; their personal interest in it may also make it their top priority for spending and reform. A person from the same locality who has never used a hospital service may have entirely different views about what local health spending priorities should be. In their written evidence, the Picker Institute argued that patient and public involvement initiatives concerned with service improvement will be mainly directed towards patients, and patient and public involvement initiatives aimed at securing accountability for NHS decision-making will be more directed towards broader groupings of the general public.[6] However, as Professor Davies emphasised, the two perspectives are not mutually exclusive and it is perfectly possible for individuals to become involved on both levels simultaneously.[7]

13. An NHS patient could exert his or her influence over the NHS at many different levels, as figure 1 illustrates, including:

Participating in treatment decisions with their clinician;
Exercising choice over which hospital or GP to use;
Giving their views on specific services directly to PPI initiatives run by individual providers or commissioning organisations (for example filling in a questionnaire about a service they have used; sitting on a patient participation group at the local GP surgery);
Giving their views on specific services to external bodies, for example PPIFs, the Healthcare Commission and Overview and Scrutiny Committees, which are charged with examining commissioning and provider organisations.

14. In addition to this, NHS patients and local members of the public can make their views on their local NHS organisations heard even if they have not been a recent patient of a particular service through:

Giving their views on broader health policy issues to organisations involved in commissioning or scrutiny of commissioning (for example, PCT PPIfs, the Healthcare Commission, Overview and Scrutiny Committees);
Becoming a member of a local foundation trust and voting in elections to its Board of Governors;
Participating in Section 11 consultations on local service reconfigurations;
Participating in national consultations run by central government; and
Voting in local and national elections.

Figure 1 - Channels of influence in the NHS

15. The picture is clearly a crowded one, and Harry Cayton of the Department of Health was frank in his admission to us that despite the numerous reforms and adjustments to systems of patient and public involvement over recent years, the Department's patient and public involvement strategy could be clearer.[8] Mr Cayton went on to tell us that "inevitably there are a number of bodies which have been created to solve particular problems and not necessarily all of them have been created in such a way that they are completely coherent with one another".[9]

16. With service providers, commissioners, regulators and scrutiny bodies all offering patients and the public the means to get involved in decision making about the NHS, an obvious question is whether introducing a further involvement mechanism such as LINks is really necessary or desirable. To answer this question it is helpful to consider the three broad channels of influence patients and the public currently have open to them.

17. The most obvious and direct route of influence for patients and the public is to express their views directly to the organisations charged with commissioning and delivery of services. Foundation trusts offer membership to all those who live locally and who use services, and hold elections to the Board of Governors. In addition to this, NHS trusts, PCTs and individual primary care providers can employ a variety of means through which to canvass the views of their service users and the wider populations their organisations serve.

18. Secondly, a further and arguably more important route of influence has been opened up through the recent introduction of patient choice of provider. Technically, patients are now able to 'vote with their feet', choosing providers with the highest quality services which best match their needs, and taking funding with them. As the NHS begins to function more like a market, with people able to make choices between providers and have a direct financial impact on trusts, the financial imperative to attract and retain patients by offering high quality services that match patient needs will become even sharper. Canvassing patients' views on what they want from their local services, on what needs improvement, and, crucially, acting on these findings, will in theory become essential to the survival of trusts.

19. Thirdly, there are a myriad of independent mechanisms, set at one remove from service-providing and commissioning organisations, into which patients and the public can feed their views. Patient and Public Involvement forums are organisations which 'shadow' each trust and PCT and have been set up specifically for this purpose. In addition to these, patients and the public can contribute to local government scrutiny processes through Overview and Scrutiny Committees and Section 11 consultations; to the national processes such as the regulatory regime run by the Healthcare Commission; and national consultations run by government and national organisations such as the National Institute for Health and Clinical Excellence.

Purpose of patient and public involvement

20. Just as the landscape of organisations through which patients and the public can express their views is complex and confusing, equally the overall aim of patient and public involvement often seems elusive, with patient and public involvement often used to serve several different purposes simultaneously. These can be broadly divided into two headings:

i. improving the quality of services; and

ii. enhancing accountability for public spending.

IMPROVING THE QUALITY OF SERVICES

21. The Department of Health's written evidence lists service improvement as the first and most important purpose of patient and public involvement,[10] and indeed most of our evidence was in agreement that patient and public involvement can make a valuable contribution to improving services.[11] Patients' views can help refocus management on things which are crucial to a patient's experience of healthcare but which may be overlooked by conventional management approaches. Involving patients can also provide a further layer of quality assurance for things that should clearly form part of mainstream clinical and hospital management but may benefit from ongoing reinforcement—for example hygiene and cleanliness. In this respect, patient and public involvement can support the work of regulatory bodies, providing a further source of information on which to base assessment of trusts.

22. The Commission for Patient and Public Involvement in Health (CPPIH) suggested in its evidence that the ultimate aim of patient and public involvement should be not improving services as an end in itself, but improving health outcomes.[12] There are also markedly different conceptions of what improving services actually means. For some, it is securing improvements in quality and efficiency and effectiveness; for others, it is playing a crucial role in quality assurance, supplementing the work of regulatory bodies.

23. In recent months there has been renewed emphasis on the importance of the commissioning or planning of NHS services, and patient and public involvement also has a vital role to play in this area, making local voices heard to ensure services are designed to best meet local needs and priorities.

24. Crucially, if patient and public involvement is done well, patients can challenge, and offer feedback to, the providers of services and commissioners, improving services by challenging existing assumptions and models of service delivery, and giving feedback on their experiences.

ACCOUNTABILITY

25. As well as the positive impact patient and public involvement can have on improving the quality of services, much of our evidence expressed the view that patient and public involvement can also make health service bodies more accountable to the public, who are the users and funders of services.

26. There is some confusion about the meaning of accountability. Dr Ed Mayo, Chief Executive of the National Consumers Council and co-Chair of the Department's expert panel on patient and public involvement, told us that:

Although we try to find out the answer by research, it is difficult to know what kind of accountability people want in relation to the NHS. Is it the accountability of a service provider, like Tesco or someone, that is just responsive to what people want? Is it accountability that is in some way mutual and engages them as partners in health, or is it some democratic process that has parliamentary or local councillor scrutiny? Those are very different notions of accountability and I have never heard very clear answers either from the patients we talk to or others in this field.[13]

27. Several witnesses stressed the importance of addressing the 'democratic deficit' by making NHS bodies in some way accountable to their local public.[14] The NHS has not been directly linked with local democracy since local councillors were removed from Health Authorities in the 1970s.

28. Some elements of patient and public involvement remained democratic; for instance, CHCs comprised elected members. More recently, accountability through the democratic process has been improved by the establishment of Overview and Scrutiny Committees, albeit that they do not all have sufficient resources to provide the depth and breadth of coverage of NHS issues in all areas. Foundation trusts are directly accountable to their membership, which is drawn from the local population and service users, but this form of accountability is still in its infancy, with only a minority of NHS trusts having achieved foundation status. In addition the number of members of foundation trusts varies considerably from trust to trust.

29. Many of those most actively promoting public and patient involvement are concerned to tackle the 'democratic deficit' in the NHS. They hope that encouraging people to get actively involved in collective activity to reshape the NHS will help reduce alienation and promote a new type of community engagement.

Are separate patient and public involvement structures necessary?

30. Given trusts' and PCTs' statutory obligation to involve patients and the public, and the fact that patient choice should strengthen the onus on the NHS to do this, do we really need separate, independent patient and public involvement structures? All businesses seek feedback from their customers to enable them to match their services to their customers' demands and maximise their profits, and it is possible to argue that the NHS should be no different from other businesses, with patient and public involvement as a seamlessly integrated core aspect of the health service rather than a separate function performed at arm's length from the organisations actually dealing with patients.

31. There seems no doubt that patient and public involvement should be an essential aspect of managing a service-providing organisation in order to improve the quality of services. There is evidence that this already happens successfully in many trusts. Equally, for commissioning organisations, patient and public involvement should be an essential part of planning services. However, good patient and public involvement does not yet happen uniformly across the health service, perhaps because it is not yet fully ingrained into NHS culture. Secondly, the NHS, although undergoing market-type reforms, is not a full market. Choice in the NHS is still a limited concept, constrained to a certain specialities; to planned care; and to certain geographical areas—there will always be patients who are not able to use choice to make their views and preferences felt. Finally, patient and public involvement initiatives run by NHS provider or commissioning organisations may not have sufficient independence and may be driven by an organisation's agenda rather than offering a truly open forum for views. For these reasons, it seems that for the time being, at least, dedicated structures for patient and public involvement are necessary.

32. Patient and public involvement in the health service happens in many different ways, of which patient and public involvement structures such as PPIfs are only one. There is an important distinction to be made between the involvement of patients and of the public which have tended to be confused. We agree with Harry Cayton's distinction (see para 10) between patient and public involvement. Current or recent NHS patients are likely to bring different perspectives to bear from those held by the general public. All these distinctions should be taken into account.

33. The purpose of public involvement is also often confused and conflated. Two main purposes need to be distinguished: improving the design and provision of services and increasing accountability. In a publicly funded service, patients and the public are in a sense the NHS's shareholders as well as customers and their views on larger decisions about spending priorities and service design must also be taken into account.

34. Patient and public involvement should be part of every NHS organisation's core business. As patient choice becomes established this will become even more crucial to service provider organisations' success. However, a separate, independent, patient and public involvement mechanism provides an important back-up until patient and public involvement is better established within NHS organisations. Any independent patient and public involvement structure should attend to the differing needs and views of both NHS patients and the wider public.

4 Q 42 Back

5 Q 4 Back

6 Ev 204 (HC 278-II) Back

7 Q 37 Back

8 Q 44 Back

9 Q 48 Back