Patient participation groups in general practice: what are they for, where are they going?BMJ 2016; 352 doi: https://doi.org/10.1136/bmj.i673 (Published 18 February 2016) Cite this as: BMJ 2016;352:i673
- 1Department of Public Health and Primary Care, Institute of Public Health, University of Cambridge, Cambridge, UK
- 2RAND Europe, Cambridge, UK
- Correspondence to: Stephen Gillam
- Accepted 29 December 2015
Patient participation groups began to emerge nearly 40 years ago and are well established in many general practices.1 The Care Quality Commission highlights their importance in ensuring that services are responsive to patients’ needs.2 Growth of patient participation groups expanded sharply in 2011 when an optional clause in the GP contract provided financial incentives for practices to set up “patient reference groups.”3 The clause stipulated that practices should gain feedback from their practice population, collate patient views by means of surveys, agree action plans, and publicise any resulting actions and achievements.3 Patient reference groups can be “virtual,” collating the views of patients online. The two terms, patient reference group and patient participation group, are often conflated.
At least two thirds of all practices in England have a patient participation group.4 Membership of the National Association for Patient Participation (an umbrella organisation which supports patient led groups in general practice) roughly trebled to over 1000 groups after 2011, and the association says that many practices were ill prepared. Practices were paid on a sliding scale related to population size for establishing a group. We estimate that payments totalled £80m (€100m; $116m) in the first two years of the scheme’s operation, but they have now been incorporated into the global sum for practice funding.
There remains uncertainty about what the money spent on patient participation groups has achieved. The Department of Health has provided no evidence of gains from this investment and there has been little research into their activities. Our literature search in PubMed retrieved only 35 relevant citations. Most of the articles were descriptive—for example, providing guidance on how to run a group—with only 11 related to empirical research, and little has been published recently. Here, we summarise the available research, examine the challenges faced by the groups, and consider their future. Although the patient participation enhanced service payments ceased in April 2015, it remains a contractual requirement for practices to have a patient participation group. However, there are no specific stipulations about how to run them and all recording requirements have been removed.5
What we know about patient participation groups
The main activity of patient participation groups is giving advice and feedback on services provided by the practice, but a lack of nationally agreed roles means the remit of groups varies widely (box 1).6 This diversity makes it harder to assess their impact.7 Several studies have identified practical challenges in establishing and sustaining groups.6 8 9 10 They face recruitment difficulties and membership is seldom representative of the patient population, in terms of age and ethnicity. Agass and colleagues found that awareness and attendance were significantly lower among men, younger patients, and those in social classes 4 and 5.11 They suggested various strategies, such as the formation of special interest groups, to make the groups more representative. Group members face an inevitable tension between retaining their status as “representative” patients and becoming “preferential” patients, known to practice staff.
Giving advice and feedback on services provided by the practice
Gathering and reviewing feedback from other patients
Assisting in the planning and evaluation of new services
Involvement in research
Providing a link to other initiatives in the local community
Health education—eg, running educational meetings for patients
Generating material support for practices—eg, through fundraising
Providing voluntary services to patients
Contributing to clinical commissioning groups’ activities
Although members of patient participation groups want to contribute to development of the practice, they often feel their voices are not heard.7 This could be because of ill defined responsibilities, lack of training in quality improvement, or lack of support for a more clearly defined role. Important determinants of success are strong leadership and support from the practice team.1 10 However, an early study of general practitioners’ attitudes to patient participation groups suggested that many initially regarded them with suspicion.12 This stemmed in part from misconceptions about the origins and functions of the groups, a failure to see their relevance to professional objectives, and a fear that they threatened general practitioners’ autonomy and status.12
Other challenges in providing feedback to improve quality of care include the preservation of patient confidentiality, which means groups do not have access to key data sources such as patient records, financial statements, and details of complaints.7
The level of involvement of patient participation groups in decisions about services is unknown but is likely to be limited. Smiddy and colleagues reported that development of groups since the financial incentive did not seem to be linked to a strategic vision or overall framework for patient involvement.8 If groups have been formed tokenistically, are practice staff really committed to listening to them? Pollard and colleagues found that social factors such as interpersonal relationships were an important determinant of influence on decision making.9
In summary, the limited research suggests that groups need clearer goals, incentives, resources, training, and support to fulfil their current roles, let alone extend them.
In recent years, the number of ways in which feedback from patients is collected has grown steadily (box 2). Questionnaire surveys attempt to provide representative assessment from the population being sampled but are skewed in favour of older, white respondents. Interviews, focus groups, and patient stories try to gain a more in-depth understanding. Other methods include the collection of complaints and compliments from patients, relatives, or friends, feedback from patient liaison services, and public meetings.13 In recent years there has also been increased use of online websites such as NHS Choices that enable patients to comment on their general practice surgery.
Box 2: Sources of patients’ view in general practice
In-house surveys—These may be about a range of topics and may use questions generated by the practice itself or adapted from other questionnaires
National General Practice Patient Survey (GPPS)—The survey is sent to one million patients a year on behalf of NHS England. It asks patients about their experience of primary care, including GPs communication skills, ease of making appointments, and views on the cleanliness of the surgery (https://gp-patient.co.uk/)
Suggestion boxes—often available in the waiting room for patients to provide written feedback
Complaints procedures—All surgeries have procedures for dealing with verbal or written complaints
Surveys for revalidation—As part of the revalidation process doctors are required to obtain feedback from patients. The GMC provides a suggested questionnaire and advises that it should be given to 45 consecutive patients, to seek responses from a minimum of 34 (www.gmc-uk.org/doctors/revalidation/colleague_patient_feedback_resources.asp)
Friends and family test—Launched in 2013 across the NHS, the test consists of a single question: “How likely are you to recommend our service to friends and family if they needed similar care or treatment?” Patients are invited to respond on a scale ranging from extremely likely to extremely unlikely. (www.nhs.uk/NHSEngland/AboutNHSservices/Pages/nhs-friends-and-family-test.aspx)
Care Quality Commission ratings—The findings of CQC inspections are publicly available (www.cqc.org.uk/content/doctorsgps)
NHS Choices and other feedback websites—As well as information about health services, the NHS Choices website contains a space where patients can comment about positives and negatives in their practice. Practices may also respond to comments posted on the site ( www.nhs.uk/Pages/HomePage.aspx). Patients can also leave comments on websites such as iwantgreatcare.org
Commentators have bemoaned the NHS’s failure to respond to users’ feedback, but which “patient voice” should the GP listen to? The plethora of sources may be one reason for a failure to respond, as may be GPs’ trust in the data with which they are provided. Yet patient participation groups, with their longer term, more intimate perspective offer something more. When relationships are mutually supportive they offer the potential to implement change. They also allow practices to have an interactive discussion with patients, rather than the one way communication afforded by most other feedback mechanisms. And, yes, some of that feedback is reassuringly positive.
Can patient participation groups be made more effective?
Changes are required both within and beyond the groups themselves. There is a need to align different sources of patient feedback if the effort and expense expended in collecting data are to generate lasting service improvement. Coulter and colleagues propose that a national institute of “user” experience be set up to draw relevant data together, determine how to interpret the results, and put them into practice.14
Individual doctors are understandably preoccupied with the imperatives of the General Medical Council’s requirements for professional revalidation. These focus on individual learning needs to the exclusion of wider organisational priorities and the broader practice environment. This tends to relegate other sources of patient feedback. Undergraduate and postgraduate training should promote patient feedback as an opportunity rather than as a threat. Such values need continual inculcation.
Group members need further support if they are to contribute to service development effectively. Their understanding of more technical aspects of quality improvement and the full meaning of clinical governance is limited as, in some cases, is their knowledge of the NHS.6 The activities of patient participation groups are confined by the boundaries within which they are allowed to operate. Their voice needs strengthening through more clearly defined roles, appropriate incentives, induction procedures, and preparatory training.
One possible model to follow is that provided by the board of school governors with their clear statutory responsibilities, access to information such as financial reports, and well resourced training and support. Governors are trained to be a “critical friend” and schools to be responsive and to consider governors’ feedback.
It is unclear where patient participation groups fit alongside the new NHS infrastructure and reforms to promote patient and public involvement in the wake of the Health and Social Care Act.15 Little mention has been made of them in recent policy documents, but they have a potential role in commissioning through interaction with clinical commissioning groups (CCGs). The extent to which groups are helping CCGs to assess healthcare needs is unknown. As CCGs are being encouraged to take on responsibility for “co-commissioning” primary care,16 local knowledge found in patient participation groups could be an asset.
Should we persevere?
To all these suggestions, objections can be raised. Crucially, is there really the experience and expertise at practice level to allow for an expanded role? Small practices may struggle to support patient participation groups but other models can be explored. Little has yet been reported on the effectiveness of “virtual” groups. Should groups, like practices, be federated and link with other groups locally? In some areas this is already happening.
The recent substantial investment in patient participation groups was an implicit acknowledgement that they are a potentially valuable resource and that the NHS needs to make better use of them. However, there is so far little evidence that they are now more influential in the running of their practices. The groups have the potential to offer responsive, interactive feedback in the spirit of true partnership. They are well placed to play a stronger role in commissioning services, particularly in primary care. However, for the foreseeable future and in their current form, these groups are likely to be confined to the margins of primary care development.
Patient participation groups expanded rapidly after the introduction of a financial incentive in 2011
Little research has been done into what they have achieved
The limited evidence suggests they need clearer goals, resources, and training to have an impact
Cite this as: BMJ 2016;352:i673
Contributors and sources: The authors both have extensive practical experience of patient participation and longstanding research interests in this field. SG supports a patient participation group as a GP.
Competing interests: We have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.
Provenance and peer review: Not commissioned; externally peer reviewed.