In this blog, we reflect on a meeting with our patient-public involvement (PPI) group and link workers. At the meeting, we talked about and got those attending to reflect on some of the data we have collected for the research we are conducting on the implementation of link worker roles in primary care.
Our patient-public involvement (PPI) group met for the second time in-person on a bright, frosty day in February. The meeting was different from previous ones as three social prescribing link workers joined us to share their experiences. We felt this was a good way to reflect upon and discuss our early ideas about the link worker role by drawing on the diverse perspectives of members of the public, researchers and link workers. The venue was Kellogg College in Oxford where we had an enjoyable lunch and time to chat and catch up before getting down to work. The meeting was divided into three activities during which discussions were held in two groups.
Getting to know you: PPI contributors finding out about the link worker role
Our first activity was a conversation between mixed groups of PPI contributors and link workers. This was a sharing session for link workers to talk about their professional background, their current role and the key challenges they encountered. PPI contributors said they found it very interesting to hear in person about the job that link workers perform. One commented on how different the role was when compared to expectations from early project meetings about social prescribing:
“Talking to the link workers showed they have to be highly skilled as they often have to work with complex situations.” (PPI contributor)
Discretion as an idea from the project so far: how important is this to link workers and what are its implications?
We moved on to two activities that focussed on a key idea from our findings so far - link worker discretion.
Discretion is a way of describing things that have an element of flexibility and judgment or personal choice. We have found in the link worker role some elements of the job are more discretionary – that is, the link worker makes their own decisions - and others might be less discretionary. The level of discretion varies. For example, at some of the sites involved in our research, how many times a patient is seen by a link worker might be fixed at 6-8 sessions. At others there are no limits and it is up to the link worker’s choice or discretion, often in conversation with the patient.
Activity: what aspects of the link worker role are discretionary?
For this activity, we invited those attending to place post-it notes describing aspects of the link worker role on a scale from more discretionary (‘about choice’) to less discretionary (‘set in stone’) (see photo below). Link workers and PPI contributors went into two separate groups so we could compare their perspectives on where there should be discretion and where some aspects of the link worker role should be ‘set in stone’ or boundaried.
One example of this is location of the patient’s meeting with a link worker. Our study has found that this varies widely across the sites taking part. In some sites, the link worker is not permitted discretion and can only see patients in the doctor’s surgery – and generally only speaks to them on the phone unless an in-person meeting is specifically requested. In other sites, the link worker can decide with the patient where to meet with them. Sometimes this might involve meeting them in the person’s home, going for a walk together or seeing them in a community setting like a coffee shop.
There were really interesting conversations in both groups. The following table gives an example of some of the points raised when the groups discussed where post-it notes should be placed. The boxes indicate where the comments were from (PPI contributors or link workers). Not all aspects were discussed by both groups due to time constraints.
There were overlaps in how link workers and the PPI contributors perceived the importance of discretion versus guidelines and boundaries about these aspects of the role. They agreed that tensions could occur when the discretion of the link worker about an aspect of the role (e.g. whether to go out to patients’ homes) may be different to patient choices due to workload, time and other resource implications.
Activity: what are the implications of having discretion?
This activity was about the pros and cons of making an aspect of the link worker role discretionary and the wider implications of doing so. For this activity we came back into mixed groups of link workers and PPI contributors. Comments were written down on a chart.
One aspect discussed was having discretion about who can refer people to a link worker. An example was patients being given discretion to refer themselves to a link worker, rather than being referred by a doctor or nurse. This was agreed to be a good principle, as it would save both patient and healthcare professional time, and increase awareness of social prescribing within the general public. However, it could also result in increased caseloads for link workers, potentially resulting in waiting lists for patients. This might ultimately be stressful for link workers and patients.
Both groups highlighted that link worker and patient choice in certain aspects of social prescribing have resource implications: this might be in terms of financial costs or the time taken to provide for choices like seeing a patient in their own home. There were also costs to patients: financial costs for things like transport, but also emotional costs. These costs might be unseen if patients are not given choice. For example, it might be that a patient has severe anxiety and feels unable to leave their home, but also does not like speaking on the phone. They would not be able to access social prescribing if not given a choice about where and how to meet the link worker.
In summary, there are multiple factors to be weighed up when thinking about discretionary aspects of the link worker role. Some aspects of discretion may be desirable and preferable to patients and link workers, but may carry a cost to services. Some aspects of discretion may have safety implications. Others may have an impact on patients’ experiences of social prescribing.
Reflections: what the link workers and PPI contributors took away from the discussions
At the end, we invited people to give their reflections on how they found the meeting. Feedback was really positive: everyone enjoyed the activities. More time, or a reduction in the number of topics to discuss, would have been helpful according to those present. It encourages the research team to know that mixed workshop meetings (including practitioners as well as members of the public) are not only enjoyable, but also generate useful ideas for us about how to understand our data.
Debra and Stephanie are working on a study that is funded by a grant from the National Institute for Health and Care Research (NIHR130247). The views expressed are those of the authors and not necessarily those of the NIHR, the Department of Health and Social Care, or the authors' host institution.
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