Why GP practices and Primary Care Networks need patient groups

This paper has been put together by patients (a task and finish group) to provide information and guidance for practices on the benefits of having an active patient group or network. The work has been led by Alan Bellinger, a trustee of HealthWatch Hertfordshire, which has supported this approach, and shared with a steering group of other patients, practice managers and Herts and West Essex ICB staff.

Summary

Although GP practices are expected to have a patient group under their general medical services (GMS) contract it would be much better if they had one because they wanted one as opposed to needing one.

This paper, which has been shared with practice managers representing practices across Herts and West Essex, argues that there are many ways in which a patient group provides benefit to a practice when there is goodwill from all parties.

The benefits a patient group can bring to the practice are:

Communications – ensuring that the information the practice wants to communicate with patients is both consistent and engaging.
Support – patients are an invaluable source of additional resource in stressful times and increased demand for GP services, such as supporting flu clinics, winter pressures, practice campaigns.
Equality of access – getting patients from different community backgrounds and groups to fully engage with the practice can sometimes be difficult but patient groups can target these groups through peer support and through networks they establish as a local resident.
Patient engagement – a proactive patient group can support the practice’s desire to promote wellbeing and self-management through face-to-face and online activities that the patient group can facilitate and develop.
Co-design of services – the lived experience that patients have can be extremely helpful in co-designing services that meet the needs of both the practice and their patients.
Winning hearts and minds – the patient group can be an agent of change in communicating and establishing attitudes and behaviours that benefit both the practice and its patients.

To develop a patient group that can support the practice in this way it is critical that a high level of trust is established between the two parties. An open collaborative approach is far more effective than a combative approach and therefore the traditional ‘critical friend’ role is no longer fit for purpose. ‘Agent of change’ or patient partner is more positive and emphasises the collaborative and partnership approach.

Communications

Practice managers often ask “If I want to talk to all patients, who do I talk to?”; the simple answer is to talk to your patient group.

A regular newsletter is a good start to effective communications. With appropriate content, you will be able to manage the expectations of your patients and avoid unexpected confrontations. Your patient group may have someone with communications experience and so developing content collaboratively and distributing it widely is an effective way to start.

A good way to manage the distribution is to put the newsletter on the web site and send texts to mobile phones to link to the site. NB in all probability you have far more patient mobile numbers than email addresses so this method is the easiest (and cheapest) way to let all of your patients know. The use of mobile numbers in this way does need to be GDPR/DPA (the Data Protection Act is the UK law that brought GDPR under UK law after Brexit compliant (see section 9 below).

Whilst a newsletter is a good start, social media can support this too. Issues raised in the newsletter can be reiterated in social media to encourage feedback and information from patients in general and link directly to more information on the website.

Surveys are an excellent way to better understand current patient experience and highlight issues that are impacting them. There are different approaches that vary between a comprehensive survey conducted at fixed intervals (eg annually), and short sharp surveys that concentrate on immediate issues such as call waiting times. A comprehensive survey provides information on changes over time whilst shorter (eg 1-3 questions) surveys provide the ability to gauge sentiment at a particular moment in time.

The whole subject of communications is closely linked to that of engagement (see patient engagement below).

Support

There is a significant level of sentiment and goodwill towards Practices, not just remembering those occasions when patients’ worries were eased by the treatment they received, but also in recognising the challenges that primary care is facing at the current time. This goodwill can be leveraged by the practice to address short-term staffing challenges, using patient volunteer initiatives such as supporting flu or Covid booster vaccination sessions.

Patients spreading good humour, support and bonhomie can easily diffuse any pressures that build up while people are waiting and can encourage the use of blood pressure monitors, carer identification, recruiting new people to the patient group etc.

Patients can also support short-term staff shortages where appropriate – especially facilitating staff re-distribution in order to preserve patient confidentiality. This could include helping in back office duties.

Equality of access

One of the areas that has been highlighted as an area of concern is the lack of equality of access to healthcare services; the recent Healthwatch Hertfordshire report identifies the extent of this as far as Black and Asian Communities are concerned. But this not only applies to people from ethnic minorities but also includes a range of different people and communities.

Personalising messages and content to different communities requires lived experience to make it effective. Your patient group can develop these relationships and manage this on behalf of the practice.

Patient engagement

The biggest challenge that a patient group faces is to engage deeply with the diversity of the practices’ patients. This can be addressed by the patient group building the appropriate contacts with churches, mosques, other religious groups, condition specific and other voluntary groups, schools, clubs etc. Although the newsletter (see communications above) is a great start as a broad untargeted approach, deepening the engagement involves much more targeted multi-layered approaches. Patient group members will be active in many areas of their local community and can provide a link to building communication and networking.

Patients have identified a series of effective ways at driving engagement including:

Online Health Webinars
Face-to-Face Health Events (including Pre Diabetes sessions in a Mosque)
Community Hub
Community cafes, to combat loneliness
Carer and long term condition support groups.

Having your patient group develop activities such as these means that you will be able to create deep engagement with patients and the wider community. This activity will also enable a practice to pursue wellbeing and self-management without reducing practice resources.

Co-design

There are multiple examples of the need to re-design processes within practices and across primary care networks. In re-designing processes, a practice may tend to focus on efficiency whilst people with lived experience will bring a totally different perspective to the subject.

Examples of successful co-design that patients have completed include:

Reducing the number of ways that patients can re-order prescriptions
Protocol for managing telephone queues and call-backs
Triage/ assessment methodologies
Support for Carers;
Supporting the interview and induction of new staff
Medicine reviews.

There are numerous ways in which patient groups can support the practice on co-design; it’s dependent on opportunities and the willingness of the practice and the patients to participate.

Attitudes

Although it’s a real challenge, as a key agent of change your patient group will, over time, be able to help the practice. There are various aspects in creating a shared destiny:

Wellbeing and self-care through engagement activities
Keeping patients up to date through communication activities
Understanding through co-design
Appreciation of each others perspectives through discussion.

The more success your patient group has with influencing a more active approach to keeping fit and healthy will be in line with the practice’s goals and help reduce the need for valuable clinical input.

Membership Model

There are two patient group models that are being deployed across Herts and West Essex:

Selective membership – patients need to apply to become members of the patient group:
Universal membership – all patients are automatically members of the patient group but can opt out of patient group communications

The main benefit of the Universal Membership model is that it facilitates engagement between the patient group’s leadership team and the patient body. Contribution is far more important than membership, and the ask for non-engaged members is so much simpler. (From: ‘do you want to be a member of the patient group’ to ‘can you help with this task’ or simply ‘would you be interested in finding out more about your condition’)

There are implications here for processing personal data; these are highlighted in a comprehensive paper providing guidance on this subject that has been developed by the patient group that developed this paper and approved by Ruth Boughton Information Governance Manager for the HWE ICS.

A patient group’s – success measures

In the interests of openness and shared destiny, the patient group and the practice need to agree targets and actions at the start of each year or when required. These could take the form of key performance indicators (KPIs), which are a great way to ensure that the practice and the patient group have shared aims.

It is suggested that there are three critical KPIs that a high performing patient group should work towards:

Open governance – it is critical that the patient group operates under good governance principles and should avoid the syndrome of a leader who sees the patient group as their personal fiefdom.
Engaging content – the content (communications and engagement) needs to be rich and engaging to ensure that the patient group maximises its contribution.
Reach – the extent to which the patient group has been able to extend its reach to all patients – especially those that are under-represented and those that could potentially experience health inequalities.

Conclusions

This paper focuses on the fact that a well-run patient group can be a real asset to a GP practice and something to be encouraged rather than avoided. Strong patient groups are also a valuable source of lived experience for the ICB as a whole.

Provenance

This paper was initially developed by a patient led task and finish group and has been reviewed and refined by practice managers, the ICB and endorsed by Healthwatch Hertfordshire.

Alan Bellinger
Task and Finish Group
Trustee Healthwatch Hertfordshire
January 2023

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