Resources for Patient Participation Groups (PPGs)

This Patient Participation Toolkit, has been co-produced with Patient Council PPG representatives, to support new and existing Patient Participation Groups and practices across Lincolnshire.

The toolkit includes:

What is a PPG?
The Role of a PPG
Step-by-step guide for setting up a PPG
What is a Virtual Patient Participation Group?
PPG top tips on what makes their PPG work well

Further resources and templates to are listed below:

What is a PPG?

A PPG is a group of volunteer patients registered with a General Practice who have no medical training but have an interest in the provision of local health services. PPGs are independent groups who take an interest in their local practice and health services in general.

What is the purpose of a PPG?

To give patients the opportunity to provide feedback to the practice
To represent the views of patients
To provide a confidential space for all patients to voice their concerns
To encourage activities and events within the practice
To develop projects that help other patients, such as befriending, help with transport and bereavement support
To gather feedback on health services in the area
To help patients understand the challenges faced in General Practice

“A PPG is a group of people who work with their practices to provide practical support, to help patients to take more responsibility for their own health, and to provide strategic input and advice. They are based on cooperation between the practice staff and patients. They help to improve communication and engagement.” National Association of Patient Participation (NAPP)

The Role of a PPG

Help the practice to improve services:

Provide patient feedback to the practice
Improve practice facilities and the experiences of patients
Carry out surveys to understand patients’ views

Offer support to other patients, including:

Offer bereavement support
Set up carers groups
Set up volunteer transport schemes for medical appointments

Provide information:

Produce patient newsletters for the practice
Make sure information and advice is user friendly (e.g. by providing feedback on leaflets and other materials)

Arrange special health events:

Arrange for training in basic first aid for patients
Raise awareness around particular issues or illnesses
Awareness for particular cultural groups around issues that relate to them

PPG is not:

A forum for complaints
A vehicle for people to resolved their own personal issues
A doctor’s fan club

What are the benefits of a PPG?

Good for the patients because:

Patients can take an active role in their own health
Patients will have a better understanding of how the practice works
Patients can be informed about what is happening in the practice
Patients will be able to influence what is happening in the practice
Patients will have a forum to discuss and feedback on wider issues with health services in the area
Patients will have a forum to suggest positive ideas and voice concerns

Good for the practice because:

Practice staff can listen to patients views
They will be able to get help from patients for projects and events
They will form a relationship with their patients
PPGs can take an active role in informing the whole patient population about what is happening in the practice

Good for the community because:

Patients will have a group that represents them
Patients will be more informed about what is happening in the practice
Patients will have an opportunity to become involved in community projects

Step-by-step guide for setting up a PPG

Step 1 - Getting Started
The idea to start a group can come from:
- A practice manager or other member of practice staff
- A patient or a group of patients
What to do next:
- Approach the practice manager/partners
- Talk to other PPG Groups
- Talk to the Integrated Care Board
- Start recruiting members to your first meeting
To start off with the PPG might consist of just a few patients and a member of the practice staff. Members of the clinical team can attend the meetings, either as a regular attender or as and when requested. The PPG should meet at least 4 times a year.
Step 2 - Recruiting to your group
There are two main ways of recruiting members to your group:
- Open groups can be launched from open meetings, which any patient can attend. You will need to advertise widely giving plenty of notice. It may also help to offer an incentive to come along, such as tea and coffee or a talk on an issue people may be interested in
- Invited groups are formed by contacting individual patients directly who are known to the practice and staff. Practice staff and doctors may be able to help to identify patients who might be interested in joining a PPG
Try to ensure that the membership of the PPG is representative of the practice’s patient population.

It is a common view that PPGs are not always representative of the practice population. As you will be aware, some people do not have the time to attend meetings. There are, however, ways you can ensure that there is a wider patient voice, some tips include:
1. Being proactive & seeking the wider voice in your local community
2. Targeting community groups that you know may be under represented in you PPG meetings
3. Being prepared that not everyone will be able to attend all meetings, and inviting some representatives to attend for a certain purpose, or as a one off.
It is possible to have a group which is a mix of open and invited representatives. You can use the invited approach to get things started, and then do some open recruiting as well.

Appendix 2 has a suggested flyer/poster for recruitment to the PPG.

Appendix 8 has a suggested template for a PPG Confidentiality and Data Protection Agreement that you can ask members to sign.
Step 3 - The First Meeting
- The first meeting should help people decide if this is something that they wish to commit to
- Be clear about the why the group is formed and what the expectations of members are, establish Ground Rules
- Set an agenda for the meeting to keep you on track
- Establish what everyone would like to get from their PPG
- Decide how you would like your PPG meetings to run and how often
- Discuss ideas and talk about skills that members can bring to the group
- In the first couple of meetings PPG members should elect a Patient Chair; this will empower the group to share their views and will encourage co-production between the patients and the practice
- Agree how the meetings will be documented
- Agree a date, time and venue for the second meeting, and try to make this within 4 weeks - it’s important to keep the momentum going.
Appendix 3 has a suggested template for a first meeting agenda.

Appendix 4 has a suggested template for notes template. Someone will need to volunteer to take some notes or action points from the meetings, or members could take this in turns.

Appendix 5 is a template for PPG Chairperson Role Personal skills and qualities.

Appendix 6 has a suggested template for Meeting Etiquette & Ground Rules.
Step 4 - The Second Meeting
The checklist below should help as a guide:
- Set an agenda for the meeting to keep you on track
- Establish who will act as Chair and Deputy Chair
- Identify a Secretary responsible for taking minutes, or use a rota system
- You will need a Treasurer if you are going to fundraise (Please note: you don’t need to do this and not all groups do)
- Terms of reference need to be developed and agreed over the first few meetings. These should be agreed with the practice and set out what the group exists to do and how it will run, allowing participants to get a clear understanding of what the PPG would like to achieve
- Decide on the timing, frequency and venue of meetings
- Make plans to review these arrangements
- Consider establishing a virtual group - not all people can or want to attend formal meetings
Appendix 7 has a suggested template for Terms of reference.
Step 5 - Keeping your group going
- Planning ahead for your group can be a challenging task but it is important to keep members focused if the group is to be successful
- Have a work plan that sets out what projects you want to undertake over the coming year – this may be surveys, awareness raising or something else
- Make sure that work is shared amongst the group
- Make your group open to a wide range of viewpoints
- Keep the practice manager and the practice staff involved
- Refresh the group and recruit new members when you can, think of recruiting people that represent your practice population.
- Organise training where you can for those undertaking specific roles such as chairing or minute taking
- Talk to other PPGs to find out what they are doing and share ideas and what has worked well for your PPG
- Share information that the ICB’s engagement team send to you to keep members informed of wider healthcare projects
- Inform the ICB of the work the PPG are doing and what Patients are saying about local services
- Get involved in campaigns and projects by attending the ICB County Wide Patient Council and finding out how you can support this work. To find out more email Claire Hornsby, Primary Care Engagement Manager - c.hornsby1@nhs.net
Appendix 9 includes examples of what/who can be included within a PPG meeting
Step 6 - Reporting back
- Keep people informed of the work the group is undertaking – this includes the practice staff, patients, the ICB and Healtwatch.
- Consider setting up a PPG noticeboard in the waiting room
- A newsletter can be produced to keep people informed about what you are doing
- If the practice has a website you can talk to the practice manager about a PPG page
- Talk to the ICB’s engagement team to get help publicising your activities – email Claire Hornsby, Primary Care Engagement Manager -c.hornsby1@nhs.net

What is a Virtual Patient Participation Group?

This is a group that can be set up for patients who would like to be involved in a PPG but are unable to attend meetings.

Emails can be sent out asking for members opinions on a range of topics. It is important to send members a Data Protection Statement telling them how their personal data will be used. Appendix 8 has a suggested template for a PPG Confidentiality and Data Protection Agreement; this can be used for Virtual PPGs as well as for meetings that meet in person.

We asked members from PPGs for their top tips on what makes their PPG work well

Here are a few top tips below.

Swineshead Medical Group PPG – “We have updated our terms of reference, it is always good to have a spring/summer clean, and look at what we are doing, with patients at the centre of everything we do. We now meet every 2 months. We meet at 6pm so we can encourage one of our doctors to attend. We choose interesting and topical speakers on health and patient care. We have a very good working relationship between our practice manager, his deputy and members of our group, and we work as a team. We know there are many changes happening, we discuss these and how they will impact on the patients and the staff. We have open and frank discussions and adhere to good practice.” Ava Harding- Bell, Chair, Swineshead PPG

Old Leake Medical Centre PPG – “The relationship between practice and PPG works very well at Old Leake. The group has a terms of reference which is displayed in the medical centre waiting room on the PPG notice board and each meeting has a set agenda. Members of the PPG are encouraged to attend every meeting. Our practice manager and/or their deputy is in attendance together with the dispensary manager and a member of staff to take minutes. On numerous occasions we have guests from the community (local councillors, representatives from medical charities or NHS departments etc.). Guest speakers are welcomed to the meetings and have included representatives for the ICB, local charities and patient support groups in the area. We have an active virtual group & any comments or concerns raised by them are discussed at the PPG meeting.” Sally Martin, Vice Chair, Old Leake Medical Centre PPG

Tasburgh Lodge, Woodhall Spa – “The PPG have a Terms of Reference which is on the website. The practice also publish our PPG minutes on the website. We invite visiting speakers to our meetings, for example, we have had Age UK talking about the befriending service, Every One to discuss the Carers Award, and one of our PPG members attended their training session. The practice manager and or deputy attend the meetings and mostly one GP. Practice updates are vital for the understanding of how things work and builds a two way communication between members and management. Last year we gained new members by being involved with PPG Awareness Week and intend doing the same this year by advertising and having an open afternoon with tea in a nearby Hall.” Jean Hill, Chair Person Tasburgh Lodge, Woodhall Spa.

NHS England resources and support

Supporting you to increase partnerships with patients, people, and communities in primary care 

NHS England have come together with Healthwatch, the National Association for Patient Participation, and The Patients Association to change the way services are delivered. The ‘Partnerships with patients, people and communities in primary care’ online discussion space will give you an opportunity for peer support, the chance to discover and share involvement examples and engage in meaningful conversations with other members.

The video will also support you in understanding the benefits of partnership working and offers you ten recommendations to improve involvement in primary care.

PPG Champions support

Patients and the public may be interested in joining the NHS Futures PPG Champions Group. This group meets every two months to bring together inspiring speakers and members of the public interested in primary care level engagement with people and communities. There are also opportunities to influence NHS England policy. Email england.ppgchampions@nhs.net to get involved.

Joining the online group is free and easy – click on the Future NHS page and ‘request access’ to create an account. Once your account is created, request to join the group. Alternatively, you can also email england.ppgchampions@nhs.net .

Resources from Patient Association videos

The Patients Association is a charity and has a variety of resources and videos on Patient Participation Groups and videos as listed below:

Watch the short video versions of our PPG Toolkit produced by the Patient Association:

Resources from National Association of Patient Participation (NAPP)

NAPP has more than 40 years’ experience in facilitating and fostering patient participation, to ensure the patient voice remains at the heart of local, regional and national decision making.

NAPP has resources for patients and details further information about PPGs including a Step by Step guide to PPGs.

The also have a dedicated section for healthcare professionals with lots of useful helpful information for GP practices on PPGs.