Patient and Public Involvement (PPI) Group

We are fortunate to have a dedicated PPI group for our NIHR funded project on the link worker role (NIHR130247), composed of the following 6 people:

• Craig Atkinson
• Maria Clark
• Bernard Gudgin
• Francoise Holland
• Tony Meacock
• Pauline Roberts

We meet around every 3-4 months but have email communication in-between meetings. Members of the group comment on our emerging data and our thoughts on this information. Our PPI group members have offered advice on relevant research processes (e.g. participant information sheets to be given to patients, questions to be asked in interviews). Later they will support us in disseminating findings to a wide audience, in an easy to understand way. Here is a summary of some of the things we have covered to date.

29^th September 2021 – Meeting 1 (online)

We introduced the project to the PPI members. We discussed the issue of people not really going to see GPs face-to-face due to COVID. This raised the question of how a health professional would pick up that someone could benefit from seeing a link worker. There was a lot of conversation about how to communicate the link worker role to patients. It was felt that some people would prefer face-to-face meetings rather than online. We agreed on some Terms of Reference for the group.

Changes to/thoughts on the study following this meeting

• To ask patients in interviews about how they preferred to communicate with a link worker and why – remotely (via telephone or video) or in-person
• To ask patients what made them decide to speak to the link worker
• To ask patients about their understanding of the link worker role

20^th January 2022 – Meeting 2 (online)

We were able to provide some early details about the initial data from our first two cases (link workers). Members of the group were not surprised that patients involved in our research had not heard of the term ‘social prescribing’ and did not understand what link workers did or who they were for; they felt there was a lack of communication about this topic to the public. The group reflected on a potential disconnect between social prescribing appointments taking place in a clinical treatment room or in a doctor’s surgery with a link worker’s focus on non-medical issues. They queried whether providing a ‘listening ear’ was the most important thing that a link worker did for people. Concern was expressed about how far link workers strayed into counselling and whether this should be part of their remit. It was felt that if there were no defined boundaries in what a link worker did, they could be pulled in a number of directions or be asked to do things they were not skilled to undertake. It was felt that a clearer, more prescribed definition of the role might be important for patients to understand how link workers could help them.

After the meeting, members of the group had the opportunity to provide further feedback on an online platform where we posed the following questions for them to consider:

• Surprising or interesting things: Things I have learnt about social prescribing through our PPI meetings.
• Ways to improve social prescribing: From what we have learnt so far about social prescribing, are there ways it could be improved for people who see a link worker, or for link workers themselves?
• Things we need to know more about: Further things we need to look at, or ask questions about, as we move forward with the study.

Changes to/thoughts on the study following this meeting

• Explore issues related to how far the link worker role (and even the title used for this role) can vary from setting to setting
• Explore how far patients understand the link worker role and what they expect from this person
• Explore the issue of boundaries (or lack thereof) for link workers in their role and what this might mean, for whom and why

11^th May 2022 – Meeting 3 (online)

At this meeting, the PPI group discussed the possibility of producing a blog about the project and their involvement in it. We decided that we would try and do this at a future in-person meeting. There was a lot of discussion about who such a blog would be for and what we would hope to communicate to the audience through it. We presented some further data from the project. This led to the group talking about how to ensure that a link worker feels part of a team in primary care; this was felt to be important for them to do their job well but it was acknowledged that the ‘soft stuff’ of team building and communication is not prioritised in all settings. How far link workers should strive to ‘fit in’ to the medical environment was considered. We also discussed the issue of the best ways for link workers to reach people from minority ethnic groups.

Changes to/thoughts on the study following this meeting

• Explore how patients feel about the link worker role alongside any other new roles in primary care (e.g. health and well-being coaches, care co-ordinators)
• Ask patients how they felt when the link worker first made contact with them – especially if a patient was unclear of the link worker role
• Ask patients what they thought about the amount of time link workers spent with them at each meeting and the number of contacts
• Ask link workers about their contacts with people from minority ethnic groups
• Contact a PPI group that has a diverse membership to talk about the study

25th OCTOBER 2022 - MEETING 4 (IN-PERSON)

In October, we were able to meet in-person as a group. We updated everyone about the progress we have been making on the project. We then invited those present to carry out some activities with us. First, we asked them to write down the first things that came into their mind when they saw key words that we have been associating with our data – holding, feedback loops and readiness. After this initial activity, we shared with PPI contributors some anonymous quotations from interviews we had conducted. We supported them to develop explanations (theories) about how patients might be affected by their interactions with link workers based on these data. The session ended with a discussion about the boundaries (or lack thereof) around the link worker role.

Changes to/thoughts on the study following this meeting

• To explore the difference in data on ‘holding’ in terms of stopping people from moving forwards (being static) and cherishing (to build up confidence to move forwards)
• To consider what the data tell us about how the link worker role has changed in recent years towards supporting people with more significant psychosocial needs
• To examine whether any data suggests patients were frustrated when referred to a link worker because their role was felt to be too broad (not specialist enough)
• To explore the data to identify whether link workers are now feeling they have to deal with patients’ problems (or hold on to them) rather than referring on to relevant support in the community
• To consider what the data say about the need for the link worker role to be given time to evolve in primary care and take shape

A summary of the meeting has been produced and can be accessed via this link. 

Changes to/thoughts on the study following this meeting 

• To define what the different aspects are of the link worker role that are discretionary (or boundaried) and if there are more than those discussed in the meeting.

• To examine the data to look at the reasons why some sites might give link workers more or less discretion than others.

• To look at the wider implications of different aspects of service delivery being discretionary, using some of the criteria suggested by the meeting participants; these include whether this might impact on personalised choices for patients and shared decision making. Some aspects might also impact health inequalities – for example, if certain types of people are excluded because they have complex difficulties in areas like mental health or social need. 

• To examine the data to ask if link workers engage in different types of discretion. If so, it might be strategic/active for specific reasons (for patient benefit, or to preserve their own situation and wellbeing) or perhaps it could be more unwitting discretion (is there any evidence of this in our data)?   

 26th July 2023 - Meeting 6 (in-person)

The main focus of this in-person meeting was to think about patients’ experiences of social prescribing. This discussion was helpful as we are in the process of writing up what we have learnt from speaking to 40 patients for the study at two timepoints (about 9-12 months apart). Prior to this meeting, we sent the PPI group members seven short anonymised vignettes based on interview data from patients. We asked them to reflect on:

• What was interesting about the vignettes?
• What were the key themes/ideas in the vignettes?
• What did the vignettes suggest about benefits for patients of speaking to a link worker?

We had an interesting discussion, which raised a range of topics including:

• The range of people that link workers assist
• The range of issues that patients come to link workers with for assistance
• The range of support that link workers offer to patients (practical, emotional, social)
• The importance of link workers listening and giving people space to talk so they don’t feel rushed
• Link workers providing people with the impetus to try different support/services to address their non-medical needs
• Patients feeling that there is a way forward after speaking to a link worker, who can help them to feel less hopeless 
• Patients looking for support with things that link workers don’t have expertise in (e.g. housing, financial matters)
• The importance of cultural sensitivity and how to support people from diverse backgrounds

We also talked about the concept of ‘holding’ that is coming from our data. This is a key activity that link workers appear to perform that may go unrecognised or may be underappreciated by those managing or funding social prescribing services. PPI group members felt that holding may be a necessary part, for some patients, of their social prescribing journey, but should be focused towards an eventual endpoint, otherwise there was a risk of link workers holding patients indefinitely.

We have our final PPI meeting at the end of 2023. This will be an opportunity to celebrate what has been learnt and achieved from working together. We have asked the group if there are particular topics from our research that they would like to talk about during this final meeting. One of the topics that they have requested is further details about what has been learnt about training received by link workers.

7TH November 2023 – meeting 7 (in-person)

This was the last PPI meeting for this project. We came together to talk about the final steps for the research team and the group’s reflections on being involved. In this meeting, we discussed with the group training received by link workers; this was something they requested we cover. We also asked for their comments on a new study we have started about the retention of link workers in their role. We thanked members of the group for their commitment to the project, which has enhanced our thinking about the data we have collected and understanding of the topic.

Thoughts on the study following this meeting

1. PPI group members liked the activities we set for them during meetings. We introduced these after the group had met a couple of times, so they felt comfortable to discuss issues with one another.

2. PPI group members enjoyed, in particular, a meeting with link workers that we arranged. Having the chance to speak to link workers about their job helped the PPI group to get a clearer view of this role in primary care. They wondered if this meeting would have been better earlier on in the project.

3. Midway through the project, we had asked PPI members to write a blog about being part of the group. They were reticent to do so. Some stated they lacked confidence in being able to articulate their thoughts in writing. Others were unsure that people would read a blog, so were sceptical about investing time in this activity.

4. Key areas PPI group members thought that link workers should receive training in included:

• IT and computer systems (e.g. in apps like JOY)
• Who is who in the practice – so they know who to refer to about what
• Medical records – accessing and adding to these
• Safeguarding
• Risk assessment
• General Data Protection Regulation
• Confidentiality – non-disclosure
• Mental health – awareness and services available in the local area
• Benefits (welfare) – where to go to find out about support available  
• Routes to employment
• Listening skills – managing time – how to focus conversations so they are productive