Whose NHS Is It Anyway?

Ways Forward For Public and Patient Involvement In England 2014

Practical Approaches To Patient And Public Involvement

The Briefest Of Summaries Of The Best Ways Forward In PPI For England

Current policy as outlined in Participation Guidance  is generally good with clear requirements for the system as a whole. However, much more can be done.


  • Democratic legitimacy needs to be increased in the NHS. In particular, commissioning and planning for the local and national NHS should increasingly be in the hands of elected people.
  • Perhaps more than democratic accountability, we need participatory accountability. That is, a system that supports, encourages and welcomes communities and individuals being part of the prioritising, planning and monitoring of services as equals and agenda-setters.
  • As part of this process, the NHS needs to develop techniques and approaches for a proactive dialogue with the people it serves, locally and nationally.
  • PPI needs to be integral to all aspects of commissioning and providing
  • Commissioners and providers need to show that they have listened and responded and they need to be monitored on their response
  • We need to include in the discussion both individual involvement (the process of consultation between patient and clinician) and collective involvement (the participation of communities and groups in the planning, development and monitoring of services)


  • Active care planning
  • Training for clinicians in promoting shared decision-making and self-care
  • Promoting the dissemination and use of
    • Decision Aids
    • Online patient record access
    • Condition-specific patient education programmes
    • Group appointments
    • Coaching and question-prompts for patients
  • Realigning incentives
  • Changing external and legal factors


  • Promote and disseminate the use of community development as a joint process between Clinical Commissioning Groups, Local Authorities, HealthWatch  and Health and Wellbeing Boards
  • GP surgeries to become more responsive to their populations
  • GP surgeries and CCGs to work more closely with local 3rd sector groups
  • Feedback from patients to become increasingly:
    • a key safety lever
    • part of the payment process for providers
    • part of choosing services
  • A strong independent HW
    • ring-fenced funding
    • continuity
    • effective data collection and evidence-based feedback to commissioners
  • More responsive and accountable commissioners, responsiveness monitored by NHS England
    • An increasing focus on communities and patients as experts in identifying local issues and solutions
    • PPI at every stage and every part of the CCG including prioritising, finances, planning, monitoring
    • Patient Participation Groups to collectively advise the CCG
    • Stronger representation on the CCG of councillors and lay people
    • Consider other options for CCGs governance:
      • with Foundation Trust-type arrangements
      • elected representatives
    • Commissioning community development
    • Prioritising individual involvement
  •         A stronger push at national level to share power with patients and citizens
    • NHS England to demonstrate responsiveness in its own commissioning
    • Community development to be promoted by making it easier to jointly commission
    • A shift towards Health and Wellbeing Boardss initially vetting CCG plans, then taking on more of the commissioning responsibilities. Then eventually LAs taking over commissioning with CCGs as key partners.


See a good summary


This means participation in the consultation between patient and clinician (nurse, GP, hospital doctor, AHP)

There is moderately good evidence that care and outcomes improve when people are involved in shared decision-making and in self-care. It probably saves money too.

For the process to be effective, both the patient and the clinician need to be involved in the dialogue and support has to be offered to both. Shared decision making relies on two sources of expertise:

  • The health professional is an expert on the effectiveness, probable benefits and potential harms of treatment options
  • The patient is an expert on herself, her social circumstances, attitudes to illness and risk, values and preferences.

Both parties must be willing to share information and accept responsibility for joint decision making. The clinician must provide patients with information about the diagnosis and treatment options and the patient must tell the clinician about their preferences

“A colleague with rheumatoid arthritis likens the experience of living with chronic illness to flying a small plane. If it is flown well, one gets where one wants to go with the exhilaration of mastering a complicated set of challenges. If it is flown badly, one either crashes or lands shakily in the wrong airport,reluctant to ever leave the ground again. The patient must be the pilot, because the other possible pilot, the health care professional, is only in the plane a few hours every year, and this plane rarely touches ground.

If chronically ill patients must pilot their planes, then the role of health care is to ensure skilled pilots, safe planes, flight plans that safely get the pilots to their destinations, and air traffic control surveillance to prevent mishaps and keep them on course. “

This implies a substantial shift in clinical activity across the whole of the NHS.

Practical interventions to make individual involvement routine

  1. Care planning. Not just having a care plan, but an active process of jointly planning care for people with Long Term Conditions. See the House of Care for more details.
  2. Training clinicians in shared decision-making (SDM) and promoting self-care. There is evidence that this changes behaviour, to some extent in the long-term. Unless clinicians alter our approach to the consultation, little will  change. There are quite a few training courses now and lots of work on practicalities by the Health Foundation.
  3. Decision aids for patients need to be available in every Out Patient Department and every GP clinic. Decision aids help to increase patient involvement in decision making and increase patients’ confidence in the process. Some studies suggest they also produce a better match between patients’ preferences and the treatments chosen, leading to increased satisfaction. There is no evidence that they make patients more anxious. Several trials have shown that decision aids can lead to a significant reduction in rates of elective surgery with no adverse effect on patient satisfaction or health outcomes.The best ways of harnessing Decision Aids need to be established, taught and reinforced.
  4. Patient online record access. This is now government policy for it to be available to anyone who asks from April 2015. has been shown to improve relationships, improve patient confidence and understanding and self-reported efficacy, and reduce the demand for appointments and telephone calls to practices. There is some evidence that self-care and compliance is improved. Patient record access needs to be available for every patient across the UK. It is emerging that patients particularly value transactional services that can be linked with record access. These include:
  • reliable information linked with their own record
  • using access to ensure that professionals and family members are informed of all their current treatment and care plans
  • the ability to improve the accuracy of the record
  • the ability (in the future) to add to the record
  • the ability to book appointments and repeat prescriptions electronically through the record.
  • the ability to see how their care management relates to good practice in the field, for instance through links with the Map of Medicine.
  1. Condition-specific patient education programmes such as the Expert Patient Programme have involved people with asthma, diabetes or arthritis. Evidence is reasonable that they make a difference to outcomes and self-confidence to manage.These are programmes for patients. Clinicians may need support and encouragement to offer such groups on a routine basis. In addition, there may need to be support or incentives for clinicians to offer interventions such as asthma self-management on a routine, systematised basis, perhaps on a cluster basis.
  2. Group appointments. These are appointments where groups of patients with the same Long Term Condition (typically diabetes or asthma) are seen together by a clinician. The aim is both to teach people good practice but also to enable patients to learn from each other and for the clinician to learn from the wisdom of the group. Better health outcomes (blood glucose control and blood pressure) are reported for group-based educational approaches for patients with Type 2 diabetes.
  3. Realigning incentives so that professionals are required to involve patients in decision making. In this brave new world clinicians would be monitored for their ability to accomplish this task. Training would be provided in shared decision making and the use of decision aids and patient engagement would be incorporated into clinical guidelines, using patient feedback to check progress. Health professionals and managers would require the use of decision aids to achieve performance targets. Relevant metrics might include the percentage of patients who report having had the opportunity to make informed decisions. Such metrics could be incorporated into accreditation and reimbursement strategies.
  4. External factors and legal requirements, such as the requirement to demonstrate true informed consent (see for example the 2007 legislative changes in Washington State), could also provide a strong incentive to make the shift from traditional paternalistic practice. Those concerned with risk management could benefit from insights derived from research into shared decision making and risk communication. Clinicians are always vulnerable to legal challenge and being able to demonstrate that effective methods have been used to communicate risk may prove to be a useful defence in court cases.
  5. Coaching and question prompts for patients. These have included coaching in how to raise issues and express preferences, question cards that act as prompts on appropriate questions to ask the doctor, encouragement to keep diaries or lists of topics for discussion, and summaries or audiotapes of the main points discussed for the patients to review later.

As a result of prompts, evidence suggests:

  • improved knowledge and recall.
  • Increased involvement and question asking,
  • Increased perception of control.
  • Prompt sheets more effective than generalised information,
  • Patient focused approaches are more effective than those targeted at health professionals.
  • Mixed results for satisfaction.
  • Length of consultation unchanged, even where question asking increases.


  • No impact on uptake of ante-natal tests.
  • Mixed results in relation to medication adherence and clinic attendance.
  • Mixed results in relation to treatment outcomes.


This refers to the involvement of people collectively influencing the planning and delivery of local or national healthcare services.

Democratic Accountability

The Secretary of State is the only elected person in the NHS. As a matter of principle, there needs to be more democratic involvement in the NHS. Critically, planning the NHS should be done with democratic legitimacy. Currently there is a real risk that planning will lend up being done by the private sector as Commissioning Support Units get taken over and gain more power.

The most obvious way is to involve local authorities more over time.

The first step would be to give Health and Wellbeing Boards more say and a veto over CCGs’ plans. Increasingly HWBs could take over local planning. Eventually Local Authorities would be in charge.

Advantages would be:

  • Holistic planning and procurement
  • Probably a stronger focus on the social determinants of health
  • Less duplication


  • Political vagaries interfering with evidence-based planning.

However, to listen to NHS staff discussing this, you’d think that Local Authorities could never commission or plan anything, hobbled by politics. This is patently not the case. And there is precious little evidence-based planning in the NHS (or anywhere) now.

Other options include elected Clinical Commissioning Groups, elected Boards for practices, Foundation CCGs, having the same sort of structure as FTs. However, as was found in Scotland, it is unlikely that new democratic structures like this would attract enough voters to be viable.

Participatory Accountability.

This is the process that happens to some extent now, with Patient Participation Groups, Health Watch and so on. NHS policy on this kind of participation is pretty good. The demands on CCGs to be transparent and to involve local people in planning are clear in the recent guidance and in the NHS Constitution.

However, practice on the ground remains poor, but is improving.

Practical ways of improving participatory accountability.

1. Community development to become a key approach.
Community development (CD) enables people to organise and collaborate to:

  • identify their own needs and aspirations
  • take action to exert influence on the decisions which affect their lives
  • improve the quality of their own lives, the communities in which they live, and societies of which they are a part.

CD aims to address imbalances in power and bring about change founded on social justice, equality and inclusion[i]. It increases community activity at two levels:

  • within the community itself: to increase social networks and productivity – more friendships, less isolation, more volunteering, more mutual aid, more informal care, better flow of information, more trust and co-operation, positive behaviour change;
  • between the community and local services and authorities: better communication, dialogue, feedback, engagement, involvement in service change.

The process begins by identifying the issues that matter most to those residents who speak up and take action, not by imposing an agenda pre-defined by health or other public service agencies. If the relevant topics are anti-social behaviour, housing or environment, those are the initial priorities for the work. All issues have a health benefit. As social networks expand, most major issues will emerge through one group of residents or another. As communities work together with agencies to solve the problems that matter to them, confidence grows, leaders appear, social capital improves and the benefits to health become apparent. Some impacts are direct, through the effects of participation on individuals; some are indirect, through service change and increase in social trust.

A resident-led partnership is often the vehicle by which this transformation takes place. This brings together local people with public agencies dealing with health, education, housing, police and other issues, in ways that have often not happened in that area before. As a local resident put it: “It’s no longer them and us – it’s us and us.”

CD is best carried out through expert community development workers but can be done by other front line service workers if they are trained for it. CD tends to be geographically-based (highlighting the most troubled communities in the area), but there are good examples of work with communities of interest, for instance people with diabetes, or the disabled.

One strand of CD is broadly known as the ‘asset-based approach’. Whilst medicine traditionally seeks needs and problems to which to respond, asset-based approaches look for the positives: the leaders, the skills, the strengths of individuals and communities, and builds on those.

2. GP surgeries more responsive to their local  populations

  • Every practice to have a patient participation group or panel.
  • Every practice to work with and collaborate with their local Healthwatch
  • Every practice to introduce easy to use feedback channels and to be responsive to this feedback
  • Practices to involve patients in the recruitment of doctors and other staff
  • The Care Quality Commission to monitor whether practices make changes in response to patients’ views.
  • Quality and Outcome Framework incentives re-introduced to encourage responsiveness, in particular:
    • Quality of care being in part defined by patients
    • Points assigned to responsiveness on areas other than merely access
    • Practices will be encouraged to work with local community development workers

3. More responsive and accountable commissioning

  • Patients’, citizens, community-based organisations and Healthwatch views to be incorporated into the commissioning process in the following areas:
    • Needs assessment
    • Choosing priorities for investment and disinvestment
    • Monitoring quality
    • Identifying problem areas and successful areas of service provision
    • Determining the shape of service development
    • Deciding on how to spend any savings
    • Patient participation groups link up to advise the CCG
    • Greater involvement of condition specific and community groups in the commissioning process. For instance  through local third sector, voluntary and community organisations
    • Community development workers to be commissioned  in each CCG, jointly with local authorities, through the HWB
      • CCG boards to be elected.  Perhaps along the lines of parent-governors in schools.
      • Participatory budgeting linked with the LA.
      • The CQC to demand evidence that local commissioners and providers have taken on board patients’ views in the areas specified above
      • CCGs’ commissioning plans to be signed off by Health and Wellbeing Board. Eventually, commissioning to be taken over by HWB and later, perhaps, the Local Authority.
      • Local Authority councillors to form half of every Board
      • Pilots to explore CCGs as Foundation Trusts

 4. A stronger push at national level to share power with patients and citizens

  • Ensure HealthWatch England is a representative organisation of Local HealthWatches. That it sit outside the Care Quality Commission. That LHWs be adequately funded with ring-fenced money. That LHW has more powers to change CCGs’ plans than now.
  • Shared decision making and sharing of information, including the sharing with patients of electronic patient records, to be incorporated as key components of training for  health professionals, and led by patients
  • An improved system for eliciting, analysing and responding to patient and user feedback, including a simplified complaints handling system,  a single phone number, and a requirement for NHS bodies to respond via internet platforms
  • Greater emphasis on community development in the agendas of health commissioners, local authorities, local strategic partnerships and HW, as a means of improving public health.
  • HW representatives to be represented on national forums for  the sharing of experience and good practice
  • Continued national support for the deployment of patient reported outcome measures (PROMs) and quality accounts as mechanisms for developing a more patient-centred service.
  •  Investment in HW to support their role of monitoring delivery of the rights guaranteed by the NHS Constitution.
  • Provider pay to be more dependent on patient feedback than now.