Select Committee on Health Written Evidence

41. Evidence submitted by the Healthcare Commission (PPI 107)


    —    The Healthcare Commission has a key role in promoting the engagement of users of services and members of the public in decisions about the NHS and health services. We give high priority to incorporating patient experience into all areas of the regulatory assessment system. Public and patient involvement helps us to ensure that people get high quality services that meet their needs.

    —    We currently do this through:

      —  our patient survey programme, which feeds into our annual ratings;

      —  consulting patient groups on how well they believe Standards for Better Health are being met, thus involving patients and the public formally through our assessment processes;

      —  seeking input from patient groups to our work programme, both in general terms and in consulting users of services when we look at a specific issue such as learning disabilities or services for older people; and

      —  learning from complaints made against the NHS, as demonstrated by our report into complaints, which will be published soon.

  We recognise that these methods still need to be developed and expanded.

    —    We believe patient experience is very important for assessing healthcare and that the NHS is caring but still not sufficiently user focused. The Healthcare Commission want to be in the vanguard of developing methods for understanding and measuring patient experience so as to improve overall healthcare in this country.


  The Healthcare Commission welcomes the opportunity to respond to the Health Select Committee's inquiry into patient and public involvement in the NHS.

  The Healthcare Commission exists to promote improvements in the quality of healthcare and public health in England, and has a wide range of responsibilities, aimed at improving the quality of healthcare provided to patients. We have a statutory duty to assess the performance of healthcare organisations, award annual performance ratings for the NHS and coordinate reviews of healthcare by others.

  We are committed to making a real difference to the delivery of healthcare and to promoting continuous improvement for the benefit of patients and the public. This response is based upon our extensive experience of engaging patients and the public in our work and assessing the way that other healthcare organisations do this.

1.   What is the purpose of patient and public involvement?

  1.1  This question suggests two slightly different meanings: what is the point of involving patients and the public; and what purposes can it serve.

  1.2  The overriding reason for engaging patients and the public in planning, commissioning and delivering health services—as well as in regulating health services—is that it helps to ensure that people get high quality services that meet their needs. We have found that by involving those who are the intended beneficiaries of health services, commissioners, providers and regulators can:

    —    gain a fuller understanding of how patients and the public experience health and healthcare, and what they need from health services;

    —    design and deliver services that meet people's needs and—as far as possible—suit their preferences;

    —    tap into lay expertise that health professionals may not have;

    —    provide information that is relevant and accessible to patients and the public, that will help them make decisions about how to safeguard and improve their health and health care;

    —    give people more control over their health, their health services and their lives: this in itself is good for people's health, as there is evidence (see, for example, the Whitehall Study) [35]that a lack of control or a sense of powerlessness contributes to ill-health; and

    —    in regulating health services, measure what matters most to patients and the public and promote improvements that meet their needs.

  1.3  Patient and public involvement can serve a range of purposes, for example:

    —    helping to decide how local services should be organised; managing expectations and avoiding conflict;

    —    helping to identify local needs and how they can best be met; identifying gaps in the provision of services;

    —    changing individual behaviour, to adopt a healthier lifestyle;

    —    drawing on the expertise and experience of people with specific illnesses/conditions to design services that meet their needs;

    —    involving people directly in delivering services and/or managing conditions—either for themselves or for relatives or neighbours; and

    —    helping to decide what information people need and in what formats and settings, in order for that information to be as useful as possible.

2.   What form of patient and public involvement is desirable, practical and offers good value for money

  2.1  It has been the Healthcare Commission's experience to date that there is no single form of involvement that suits all purposes. It is dependent upon the desired outcome. There are different kinds of involvement, which have been variously described as parts of a "ladder of participation" or "spectrum of involvement". These fall roughly into three categories where the role of the patient/citizen is "passive", "interactive" or "active". We set out some examples below. This is not an exhaustive list:


    —    providing information (health education campaigns, leaflets); and

    —    researching people's experiences and opinions (quantitative surveys, qualitative surveys, focus groups).


    —    exchanging views and information through discussion (public meetings, workshops, online discussions, citizens' forums);

    —    considering options and refining plans and decisions (deliberative panels and workshops, online Delphi forums); and

    —    shared planning and decision-making (consensus conferences, citizens juries, "planning for real").


    —    devolved decision-making (individual budget-holding, referenda, neighbourhood planning); and

    —    devolved service provision (self care, third sector delivery, co-production).

  2.2  There are many different methods of involving patients and the public. In our experience, the best way to ensure that the form is "desirable, practical and offers good value for money" is to be clear about the purpose, to understand the range of methods available, and to select a method that suits the purpose. For example, if a reconfiguration of local services is to be undertaken in partnership with local residents, it could benefit from engaging them in an informed dialogue over a period of time, leading to a shared decision. Forms suited to this purpose would include a deliberative workshop series, or a citizens' jury. But if a decision has already been made and you just want to know how local people will react to the decision, the best thing may be to conduct an opinion poll or hold a series of focus groups. It is important not to confuse research and engagement. It is also important to recognise that providing information is a useful starting point for engaging people in a dialogue; but on its own it is not very "involving".

  2.3  The Healthcare Commission has prepared a set of "ground rules" for effective engagement. These apply in most circumstances—see box below

2.4 Healthcare Commission ground rules for engaging patients and the public

Engage Early
If you are starting to plan and project, you will need to be sure you are gathering and/or conveying information that is really useful. Ask who is likely to be affected and who is supposed to benefit from the work. Start by finding out what matters most to them and what they need to know.
Know what you can change
You must be able to take account of what people tell you. That means being clear about what decisions you still have to make, what is negotiable, what you can and cannot change, and where there is choice between specific options.
Embed engagement in the work process
Engaging patients and the public should be integrated into the design of your project and work plan - from start to finish
Include all the right people
Think carefully about who should be engaged with patients and the public. Is it a particular group of patients or carers? Is it appropriate to engage members of the wider public? What about black and minority ethnic groups, disabled people and children? You may need to make special efforts to reach out to those who are especially vulnerable to ill health, but whose voices are seldom heard.
Choose your methods to suit your purpose
There are many different ways you can engage with patients and the public. Be clear what it is you are trying to achieve. For example, think about whether you want to carry out opinion research, or involve people in an informed dialogue. Then select one or more methods that will enable you to achieve your purpose.
Provide clear information
Make it clear to those you invite to participate what you are doing and why, including what you can and cannot change in the light of what they say. Provide them with as much information as possible to help them participate fully in a dialogue with you.
Make sure you have adequate resources
Work out how much it will cost and where resources will come from
Keep things in proportion
Consider the scale of the project, as well as your timescale and budget. Keep your plans for engaging patients and the public in proportion with these factors.
Act on what you learn
What you learn from patients and the public about what matters most to them and what they want to know should, as far as possible, inform and change your work.
Always give feedback
Tell your participants what you have learned from them and what action you intend to take in response. If you do not intend to act on what you have learned, explain why not. Wherever possible, show what has changed as a result of your actions.

3.   Why are existing systems for patient and public involvement being reformed after only three years?

  3.1  Notwithstanding the admirable work of many Public and Patient Involvement (PPI) Forums, and the obvious disadvantages of changing structures within a short period of time, the main disadvantages of the existing system, based on our experience of working with forums and the Commission for Public and Patient Involvement in Health (CPPIH) over the last two years, are as follows:

    —    forums can find it hard to be genuinely inclusive, or to reach out to disadvantaged and minority groups, and younger people;

    —    the current arrangements encourage an "us and them" approach to public involvement. In the worse cases, polarised opinion and mutual distrust diminish opportunities for constructive partnership working and consensus building. This does not help local people to get what they want from local services any more than it helps NHS trusts to provide "patient centred" health care;

    —    many voluntary organisations, which have much experience of working with patients and the public, have been left out of the dialogue between trusts and forums. The forums have tended to speak for local people, rather than acting as a conduit between trusts and the wide range of patient-led and community-based groups that exist in most localities. The effect can be exclusive;

    —    the existing system—a complex set of arrangements for patient and public involvement, with a forum attached to each trust and an overarching Commission—may discourage trusts from taking full responsibility for making sure that they engage effectively with their local residents and client groups;

    —    this is a "one size fits all" model, which may not adapt easily to changing circumstances in the NHS or to differing local conditions;

    —    as health and social care become more closely aligned, and as there is increased partnership working and shared planning between NHS trusts and local government, it is doubtful whether PPI forums are well suited to bridging the gap between NHS and local government services; and

    —    the fact that the government and the NHS are trying to reduce the burden of regulation on trusts does not sit easily with the forums' having a statutory right to visit and inspect local services. The Healthcare Commission carries out inspections and investigations, and has a strong commitment to involving patients and the public in its regulatory processes. It is debatable whether a separate right of inspection on the part of forums is necessary or appropriate.

4.   How should the LINks be designed?

  4.1  We strongly support the idea of a local involvement network, located in the local authority, which acts as a conduit between health and other public sector organisations, and groups representing patients and the public. This model, recommended by the expert panel convened by the Department of Health, is a facilitative mechanism for engagement, not a new institution that "does engagement" for the area in which it sits. In other words, its remit is to help health and other public sector organisations to reach out into the community; it does not pretend to speak for the community. It is important in our view that the LINk facilitates engagement with independent groups and organisations at local level, and is able to help local voices be heard and heeded without interference. The LINk should safeguard the integrity of the process of involvement, and authenticity of local voices. They should have duties to perform their role as enablers and conduits. We do not support efforts to recreate PPI forums by LINks becoming independent statutory bodies with "rights of inspection".

  4.2  LINks should not be clubs or membership organisations; they are networks. Any local organisation representing patients and/or the wider public should be part of the network. One local organisation—or a consortium—will need to host the network. The local authority partnership with the primary care trust should appoint the host organisation.

  4.3  Funding should be secured for more than one year at a time, and should be sufficient to provide resources that will maintain and build the network, and enable local groups to participate in consultations and dialogue with trusts. Funding should be provided for this purpose by the Department of Health. It seems sensible that the LINks should also be supported by the local authority, so that they become the main conduit for patient and public involvement for councils as well as trusts (see below).

  4.4  LINks should focus in the first instant on enabling NHS trusts to engage with groups representing users of services and the public at local level. They should facilitate consultation and dialogue about health and social care services. Once established, they should be encouraged to extend their focus, with support from local authorities, so that they facilitate consultation and dialogue about other local public services as well.

  4.5  As enabling or facilitative mechanisms—networks, not institutions—LINks should not have statutory powers. NHS trusts should have a statutory duty to engage with patients and the public via the LINks.

  4.6  We agree that a LINk should be established in each local authority with responsibilities for social services. Trusts should have a statutory duty to engage patients and the public through them.

  4.7  The National Centre for Involvement (NCI) should be responsible for building capacity of LINks and trusts to promote effective engagement with patients and the public. The focus of LINks should be local rather than national. There is no need for a national coordinating body, although it may be appropriate for the NCI to bring them together regularly so that they can learn from each other, as a means of building their capacity.

5.   How should LINks relate to certain organisations and avoid overlap?

  5.1  LINks should work closely with overview and scrutiny committees and refer issues that seriously concern local groups to them.

  5.2  It should be possible for FT members' councils and boards to participate in the LINk in the same way as other local patient led organisations would do so.

  5.3  The Healthcare Commission should be able to engage patients and the public locally via the LINks. It should have a duty to involve patients and the public, via the LINks and other means, in assessing the performance of healthcare organisations, including follow-up inquiries and inspections when it identifies risks of under-performance, as well as service reviews and audits. The LINks should be invited to coordinate commentaries from patients and the public, through groups and individuals that are part of the network, for inclusion in the declarations made by trusts as part of the annual health check.

  5.4  Effective, continuous engagement between trusts and local people via the LINks and other means (including PALs, Patient Advice and Liaison Services) should reduce the risks of complaints arising, but it is not envisaged that LINks would be involved in complaints procedures.

6.   In what circumstances should wider public consultation (including under Section 11 of the Health and Social Care Act 2001) be carried out and what form should this take?

  6.1  NHS trusts should undertake wider public consultations when they are considering making significant changes to local services. In principle, these consultations should follow the ground rules set out in Box 2.4.

Healthcare Commission

January 2007

35   Marmot MG, Davey Smith G, Stansfeld SA, Patel C, North F, Head J et al Health inequalities among British Civil Servants: the Whitehall II study, Lancet 1991; 337:1387-1393. Back

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