Patient Participation Groups Research Articles

Developing patient reference groups within general practice: a mixed-methods study.

Clinical commissioning groups (CCGs) are required to demonstrate meaningful patient and public engagement and involvement (PPEI). Recent health service reforms have included financial incentives for general practices to develop patient reference groups (PRGs). To explore the impact of the patient participation direct enhanced service (DES) on development of PRGs, the influence of PRGs on decision making within general practice, and their interface with CCGs. A mixed-methods approach within three case study sites in England. Three case study sites were tracked for 18 months as part of an evaluation of PPEI in commissioning. A sub-study focused on PRGs utilising documentary and web-based analysis; results were mapped against findings of the main study. Evidence highlighted variations in the establishment of PRGs, with the number of active PRGs via practice websites ranging from 27% to 93%. Such groups were given a number of descriptions such as patient reference groups, patient participation groups, and patient forums. Data analysis highlighted that the mode of operation varied between virtual and tangible groups and whether they were GP- or patient-led, such analysis enabled the construction of a typology of PRGs. Evidence reviewed suggested that groups functioned within parameters of the DES with activities limited to practice level. Data analysis highlighted a lack of strategic vision in relation to such groups, particularly their role within an overall patient and PPEI framework). Findings identified diversity in the operationalisation of PRGs. Their development does not appear linked to a strategic vision or overall PPEI framework. Although local pragmatic issues are important to patients, GPs must ensure that PRGs develop strategic direction if health reforms are to be addressed.

Relationship continuity: when and why do primary care patients think it is safer?

Doctor-patient continuity is popular with patients and practitioners, and is associated with better outcomes; however, changes in policy and practice organisation have diminished its scope. Although there has been some discussion of safety implications from professionals' perspective, patients' views remain largely unexplored. To explore patients' understanding of safety in primary care. An interview-based study with patients from general practices in the northwest of England. Patients were recruited from five general practices through patient participation groups and posters in waiting rooms, with further participants recruited through snowballing techniques until no new themes emerged. In-depth interviews were digitally recorded and transcribed. Anonymised transcripts were coded and analysed inductively. Emergent themes were discussed by the team. For patients, relationship continuity was not simply a matter of service quality but an important safety concern that offered greater psychosocial security than consultations with unfamiliar GPs. Relationship continuity enabled the GP to become a repository of information; acquire specialist knowledge of a patient's condition; become familiar with the patient's consulting behaviour; provide holistic care; and foster the development of trust. Patients were also aware of the risks: a false sense of security and lack of a fresh perspective. Their desire for continuity varied with the nature of their concerns, psychological vulnerability, and perception of GPs' qualities and skills. No one supported a return to imposed continuity. Relationship continuity and choice of GP were important safety strategies, neither of which is adequately supported by recent policy changes.

Impact of lay partners on co-production of integrated care policy

Setting: North West London (NWL), an urban area composed of 8 boroughs with a highly diverse population of 2.2m. In October 2013, NWL was selected as one of 14 NHS Integration Pioneers. Background: NWL have been integrating physical, mental and social care provision for elderly and diabetic patients since 2011, with citizen engagement through a Patients, Carers, Users Group. From September 2013 we have been planning to widen the scope and scale of the initiative to a ‘Whole System’ approach, to be implemented in 2014. We intended to co-design the new system from the start with patients/users/carers and other citizens. Method: The design structure included five workstreams (Populations and Outcomes, GP Networks, Provider Networks, Commissioning and Finance, Informatics) plus a cross-cutting Lay Partners Advisory Group of 20, which was recruited from among patients/carers/users who already had experience of acting in a representative role and had the capability, capacity and commitment to take on an active role. Some were drawn from the existing Group, others were nominated via each borough’s Clinical Commissioning Group, Healthwatch, Adult Social Services, primary care patient participation groups and patient charities. A full day of training for potential Lay Partners was commissioned from the Centre for Patient Leadership, a patient-led organisation. Expenses incurred by Lay Partners were remunerated. Outcome: All the design workstreams and the overarching programme board have had 1-3 Lay Partners as full members from the first meeting. Lay Partners attended on average eight hours of meetings per month, plus reading and commenting on discussion papers. They developed a ‘CoProduction Touchstone’ setting out principles and best practice, which was accepted by the Board. Some have been asked to co-chair their workstream. Their major impact has been to keep the focus on designing patient-centred accessible, pro-active and high quality care. They act as ‘guardians of the vision.’

PUTTING RESEARCH INTO PRACTICE: MAKING A DIFFERENCE TO CARE

BackgroundIn 2012 a study to explore hospice nursing and medical staff knowledge of, and attitudes towards, organ and tissue donation was undertaken. The study identified that the barriers to discussing...

Interprofessional communication for adults who need multiple agency input.

This month's issue of LJPC is concerned with communication for the shared care of vulnerable adult patients. Indeed, there have been many strong arguments that shared records are a necessity for good quality end-of-life care, and ‘out-of-hours’ general practitioner (GP) services usually have access to special patient notes (SPNs) for patients whose GP considers them to be at a particular risk outside surgery hours. Shared (often electronic) records can potentially enhance the quality of non-routine care, while at the same time preventing unnecessary, often unwanted, sometimes harmful and always costly hospital admissions. In this issue: Victoria Holt et al discuss SPNs, the current standard tool by which UK GPs convey information about vulnerable and complex patients to out-of-hours GP services. Holt provides data from four audits that reveal different insights: frequent callers, patients seen who might benefit from SPNs, the quality of existing SPNs, and GP views about improving the SPN system. The authors conclude that the SPN system is very useful and needs to be actively managed, including prompts from out-of-hours to day-time GPs to provide and update them. Catherine Millington-Saunders et al give an account of ‘Coordinate My Care’ – a new tool that has been established across London to assist communication for the care of patients receiving end-of-life care. So far, this is showing promise, and needs to be integrated with other communication systems including SPNs. Georgina Jones and David Whitmore emphasise ways in which ‘Coordinate My Care’ is helping London Ambulance staff to address end-of-life care issues. Andrew Papanikitas revisits the public discussion on electronic healthcare records held between the RCGP Ethics Committee, Patient Participation Group and Informatics Group, and finds mismatched discussions and recurring anxieties. In London Landscape, Francesco Carelli reflects on Picasso, human misery and hospice care.

Sharing electronic records: separating out the signals from ethical white noise.

The development of shared electronic records has been galvanised by initiatives to improve the information technology infrastructure of healthcare and by fragmentation of healthcare provision. This report uses a public discussion by the RCGP Ethics Committee, Patient Participation Group and the Informatics Group to review key issues relating to shared electronic healthcare records. These records may be a social necessity, and ethical and legal safeguards may allay some public and professional anxiety about their appropriate use. Many of the specific ethical concerns, such as confidentiality of healthcare information, are not new but how these concerns arise in context may be. Function creep was a key concern in the discussion.

Engaging patients, users and carers in integrated care.

Engaging patients, users and carers is an important enabler of integrated care. We describe how the Inner North West London Integrated Care Pilot set up a Patients, Users and Carers Committee, found volunteers to join it, and and helped to prepare them for their role. Representatives from the group were included in the membership of the Pilot's management board and committees and took part in several engagement and educational events. Some obstacles and challenges were encountered, including communicating with a large number of patient participation groups across the area, managing the high expectations of the group about how quickly reforms could be achieved, and ensuring that members of other committees understood the role of the representatives. Benefits included easy access to the perspectives of patients, users and carers when developing the strategy, policies and processes of the Pilot. Representatives proved to be eloquent advocates, and played a part in the success of the Pilot in winning some prestigious awards.

Nothing about me without me …?

![][1] ‘Lock the doors’ said the practice manager. She was only half-joking. We had tried very hard to advertise our patient participation group for a number of months using all the recommended methods. However I don’t think any of us expected 30 people to turn up on a wet Autumn evening. We were in danger of running out of chairs and biscuits. I’ve been a big fan of patient participation groups long before they became the right thing to do, but will own that they tend to be too full of people like me (white, middle-aged, middle-class women). So for me, the really exciting part of watching people take their seats was that only 50% were the ‘usual suspects’, with previous patient participation group form. Our new recruits included teenagers and … [1]: /embed/graphic-1.gif

The provision of public education – a hospice's journey

The End of Life Care Strategy highlighted the importance of public education and the Dying Matters coalition was created to encourage people to talk about dying. This describes the experience...

An evaluation of patient participation groups for people

The aim of this study was to evaluate the work of four diabetes patient participation groups in Southwark Primary Care Trust to inform the group leaders in their efforts to develop and improve the groups' operation and support of patients. Method: A questionnaire was distributed to 661 patients on the local PPGs' mailing list and 234 were returned, a response rate of 38%. Separate ‘illuminating’ interviews were conducted with three participants who attended less regularly. Results: Key findings were that: (1) the diabetes PPGs helped provide people with more knowledge, information and skills to manage their diabetes with greater confidence; (2) about 45% of patients (n=106) said that the groups had helped them manage medication better; (3) 57% (n=134) reported that the groups had helped them change their diet and 65% (n=152) of patients said that the groups had helped them to learn to eat more healthily. Conclusions: It is recommended that access to meetings is improved for patients with time and mobility constraints, and that PPG funding is made more secure.

Patient participation in general practice

Establishing a patient participation group can benefit both patients and practices.

Teaching and motivating patients to control their risk factors retards progression of cardiovascular as well as microvascular sequelae of Type 2 diabetes mellitus— a randomized prospective 8 years follow‐up study

To examine whether motivating patients to gain expertise and closely follow their risk parameters will attenuate the course of microvascular and cardiovascular sequelae of diabetes. A randomized prospective study on 165 patients with diabetes mellitus Type 2, hypertension (> 140/90 mmHg) and hyperlipidaemia (LDL-C > 3 mmol/l), referred for consultation to a diabetes clinic in an academic hospital. Patients were randomly allocated to standard consultation (SC) or to a patient participation (PP) and teaching programme. Follow-up continued by primary care physicians. The mean follow-up was 7.7 years. SC group patients each attended eight annual consultations. The PP patients initiated on average 1.2 +/- 0.8 additional consultations per annum. The relative risk (RR) over 8 years, for the combined cardiovascular event index in the intervention (PP) vs. the control (SC) group was 0.65 (95% CI 0.41-0.89, P = 0.001). Nephropathy developed in 14 vs. 7 patients in the SC and PP groups, respectively, RR 0.50 (95% CI 0.28-0.85, P = 0.02), retinopathy developed in 35 vs. 21 patients, RR 0.60 (95% CI 0.21-0.82, P = 0.03). Throughout the study, period blood pressure, LDL-C and HbA1c were significantly lower in the PP than in the SC patients. Well-informed and motivated patients, were more successful in maintaining good control of their risk factors, resulting in reduced cardiovascular risk and slower progression of microvascular disease.

Treatment of High-Risk Patients with Diabetes

The aim of this study was to examine whether motivating patients to gain expertise and closely follow their risk parameters will attenuate the course of microvascular and cardiovascular sequelae of diabetes. A randomized, prospective study was conducted of 165 patients who had type 2 diabetes, hypertension, and hyperlipidemia and were referred for consultation to a diabetes clinic in an academic hospital. Patients were randomly allocated to standard consultation (SC) or to a patient participation (PP) program. Both groups were followed by their primary care physicians. The mean follow-up was 7.7 yr. The SC group attended eight annual consultations. The PP patients initiated on average one additional consultation per year. There were 80 cardiovascular events (eight deaths) in the SC group versus 47 events (five deaths) in the PP group (P = 0.001). The relative risk (RR) over 8 yr for a cardiovascular event in the intervention (PP) versus the control (SC) group was 0.65 (95% confidence interval, 0.89 to 0.41). There were 17 and eight cases of stroke in the SC and PP groups, respectively (P = 0.05). RR for stroke was 0.47 (95% confidence interval, 0.85 to 0.32). In the SC group, 14 patients developed overt nephropathy (four ESRD) versus seven (one ESRD) in the PP group (P = 0.05). Throughout the study period, BP, LDL cholesterol, and hemoglobin A1c were significantly lower in the PP than in the SC patients. Well informed and motivated patients were more successful in obtaining and maintaining good control of their risk factors, resulting in reduced cardiovascular risk and slower progression of microvascular disease.

Empowering patients through teamwork

In Southwark PCT patient power is more than a policy handed down from Whitehall. The Southwark diabetes patient participation group meets monthly at Peckham Pulse healthy living centre. The patients choose a topic for the meeting, e.g. diet, eye screening, medication, and a professional is invited to speak. Speakers do not prepare presentations; instead they respond to the questions patients ask during the meeting. If the speaker is unable to answer, he/she investigates the question later and sends the answer to all participants with the notes of the meeting. The discussion, on such topics as interactions between diabetic medications and complementary therapies, benefits health professionals as well as patients.

Patient participation groups in general practice in the National Health Service.

General practice remains the organizational hub of first level health services in the United Kingdom. Patient participation groups are probably the most well known model for public participation in this setting and, although still not widespread, they have been a slowly expanding area of development for almost three decades. This paper sets out to critically asses patient participation groups in general practice by considering the context of their development and reviewing the research literature about groups. Critical issues needing more study and key methodological challenges are then discussed. Patient participation groups have been a somewhat shifting and contested phenomenon, embracing trends and changing as policy priorities have changed over the years. There is some evidence to think that they might have potential as a local element within a public participation strategy in the National Health Service. However, the field studies are very limited and more research of a better quality is needed. The state of knowledge is not adequate to be able to say with any confidence if or how such groups should be developed. A better understanding is needed of the public's perspectives on this and other models of participation. There are many other questions to do with patient participation groups' purpose, equitable access, and effectiveness that need to be addressed. The methodological challenges include issues of how to involve all stakeholders in the research process; and how to study less tangible aspects of general practice organization, such as culture and power, that effect the public's participation.

Experiences with “rapid appraisal” in primary care: involving the public in assessing health needs, orientating staff, and educating medical students

The incorporation of lay perspectives in research and development in the health service is not only politically mandated in recent white and green papers but also has the potential to...

Priority setting in general practice at the local level: From patient participation to community orientation?

As with other sectors of the health care system, general practice becomes more and more involved in the process of priority setting. The daily decisions of general practitioners about whether or not to refer, investigate or prescribe frequently reflect implicit prioritisation.’ There is no doubt that in the field of primary health care, the inclusion of the patient’s perspective into the process of priority setting is of utmost importance. The question is how this can be implemented at the local level. In 1972 the concept of patient participation groups in general practice became a reality, when two practices at Aberdare: and Berinsfield,) established them. In the seventies and eighties patient participation groups have been developed in different European countries. The term patient participation covers a lot of different activities: receiving information (reading practice leaflets, listening to organised conferences on health promotion, etc.), volunteers’ activities (visiting and helping the sick, elderly and disabled; providing transport for those who can not reach health care facilities; co-editing a health-newsletter, etc.), and participation in policy making. In this journal an overview is presented on the quality and content of GP-practice leaflets in the United Kingdom.‘ The research shows that if adequate information in the practice leaflet is a key issue for the quality of care. The involvement of patient participation groups in policy making and especially in priority setting at the local level has revealed several problems.s The first problem is how representative are group members of the practice population: a study in a general practice in Oxfordshire demonstrated that only 45% of the patients were aware of the existence of a patient participation group and only 7% had ever attended a meeting6 Awareness of the group was significantly less in men, patients aged between 16 and 29 years, those in social classes 4 and 5, single people and

The use of ephemera with particular reference to blood and organ donation: a review of sources.

Emphasis has been placed upon a study of the use made of ephemera such as leaflets, pamphlets and booklets by non-professional staff working in British statutory organizations such as health authorities, community health councils and family health services authorities as well as voluntary organizations such as charities, citizens' advice bureaux and patient participation groups. Publicity methods and the use made of ephemeral materials by those statutory and voluntary organizations involved in recruiting and retaining blood and organ donors is highlighted. Research findings confirm that patients, carers and others, wish to receive comprehendable and appropriate health information. Ephemera provided in support of this need are not comprehensive in subject coverage and lack any standardization of format. In particular, great care needs to be taken with the design of leaflets, pamphlets and booklets. Ephemeral materials are difficult to locate and obtain, and no bibliographical centre exists to coordinate and support existing activity by identifying, acquiring, storing, advertising and distributing such health care material. Marketing and publicity skills, and much time and effort are required to rectify this deficiency, and thus to satisfy the needs of consumers.

Why patient participation groups stop functioning: general practitioners' viewpoint.

Out of the 87 patient participation groups that were known to the National Association for Patient Participation as having been established by the end of 1983, 17 (25%) are not functioning. The general practitioners concerned with these non-functioning groups were interviewed to identify problems that they had had in keeping the group going and to seek possible explanations for the problems. Fourteen of the groups had stopped functioning in part owing to lack of interest by patients. Groups become non-functioning often in the first year of starting up, and this may be because of the nature of the practice population that they seek to represent.

Survey of patient participation groups in the United Kingdom: II.

Funding is an important?and for 44% of groups a daunting ?aspect of running a patient participation group. Annual budgets seem to range between ?50 and ?150, though four groups spent well over this in 1981, oneover ?850. Large spending of this sort is usually accounted for by special projects, such as publishing booklets. With few exceptions groups attempt to raise as much as they can from the patients by arranging social functions, raffles, sponsored activities, and so on. One group does very well each year from a cake and biscuit stall at the local May Day fair. Roughly half the groups are helped out financially by their doctors, who donate between a quarter to a half of the budget. Sometimes this is only as a "starter"; more often it is a regular contribution. Financial help is frequently sought from outside organisations, either statutory or otherwise, usually for help with particular projects. Because this is an area of consider? able practical interest to many groups, it will be dealt with in some detail. Before their demise area health authorities made money available to three groups: ?10 for leaflets, Bcrinsfield; ?300 for making health education films, Aberdarc; ?700 to produce and publish a "centre users" guide, Kentish Town. One district management team allocated ? 10 to help a group to start operating, and a local social services department in London provided ?50 for the same purpose. Local charities, firms, and other organis ations have also helped : a total of ?250 was granted over two years by three local charities to enable the Bristol group to publish their booklets; ?270 was contributed by local charities to support the work of one community care group; ?25 and ?40 have been received by two other groups from local firms and organisations. ?300 was given by the King's Fund in London to finance the Bristol group's 1981 health education programme, their application to the local area health authority having been turned down. Several groups have received fees from press, radio, and television. Drug companies are understood to have made small contributions to some budgets.