How can patients, the public and health professionals work better together?

Debbie Hatfield
Debbie is a nurse and used to be a university lecturer at the University of Brighton. She finished her PhD in 2019. She’s just embarked on a two-year part-time Economic and Social Research Council funded postdoctoral fellowship under Angie’s mentorship  Here, Debbie talks about her PhD research and what she hopes it will achieve.

‘…we are not sort of just generic patient people…’

It is complex trying to grapple with the terminology of patient and public involvement (PPI) or patient and public engagement (PPE) in the English National Health Service (NHS).  Of course, this isn’t just about semantics. We need to ask what policy is driving the process? Is it about citizens’ democratic rights to have a say on how public money is spent fairly? Or about having choice and customer-like feedback to choose and improve services? And more importantly, what does this mean for PPEI for clinical commissioning in the post COVID world? The ‘terminological instability’ and conceptual muddles described by Forbat, Hubbard and Kearney, amongst others, are well-documented. Ellen Stewart, a social scientist at Edinburgh University interested in ‘lay’ and ‘expert’ knowledge for public engagement in health systems has said that it is about the purposes of ‘participation’. (For an up to date account of the terminology, see the annotated and critical glossary written by Islam and Small .) After doing my literature review, I decided to use the PPEI acronym because it was about first engaging patients and the public if you were serious about involving them on a peer to peer basis.

Understanding participation and partnership

My research focused on two new Clinical Commissioning Groups (CCGs) in England that were formed following the Health and Social Care Act 2012 (HASCA). CCGs are statutory NHS bodies led by General Practitioners (doctors in community or primary care known as GPs), and are legally required to engage and involve service users (patients and carers) and the public. At the time, GPs were fairly new to this type and scale of commissioning. It was a huge change and there were worries about GPs taking charge of such large NHS budgets as clinical leaders. Population sizes could be up to about 860,000 people in a CCG and so we are talking large sums of public money to buy services. (Pages 12 and 13 of this  document explain the extensive changes in NHS commissioning that were happening at the time.) Were GPs equipped to lead strategically at such scale despite prior experiences of commissioning and pilot CCG case studies?

I wanted to look at clinical commissioning from a different angle and especially the leadership and trust practices. My background as a lecturer meant I was curious about how the learning was taking place. I had questions about PPEI as a social practice rather than focusing on whether participation was ticking the NHS policy box requirements. I looked to the work of several eminent theorists to explore the landscape of commissioning ‘communities of practice’ (CoPs).  I saw these CoPs as the various groups that convene for CCG business such as the Governing Body and the Communications Strategy Group, all of which are required to have service user representatives as well as GP leaders.  Tara Fenwick’s ideas on professional learning were helpful too for understanding the practices rather than focusing on the ‘head’ knowledge. You know, when someone has all the facts in their head about how to do something but that doesn’t always mean it is done well for the person on the receiving end of the process. Fenwick considers the material everyday organic and inorganic stuff such as furniture, forms, passcodes, checklists, minutes and databases that have to be learnt and navigated as well as the social entities like the meanings, fears, desires and cultural discourses. We can probably all identify with having to learn new things and new ways of doing something and how that makes us feel. By asking my research question (below), I wanted to explore how GP clinical leaders could learn to engender trust in co-productive working with service user and public ‘peers’. In addition, what lessons there could be for health care professional education.

What does it mean to work in partnership as clinicians and service users to commission and lead services?

I carried out focus groups which are like small discussion groups around a topic, observed meetings to see what was happening and collected relevant materials such as reports and minutes of meetings. I also conducted face-to-face interviews. All 21 informants from the focus groups and interviews were either service users, lay (public) representatives on CCG Governing Bodies or GP clinical commissioning Leads, living and/or working within the boundaries of the CCG communities. I have written about my research methods in the publication Research Matters which followed after a presentation I gave at a research conference.  

Once I had collected all my data, and there was a lot over the 12-month period, coded and sorted into categories, I arranged them into four bundles of what I saw as collective situated learning practices in the CCG CoPs. These were practices around trust, leadership, learning and partnership and informed the doing or performance of PPEI for clinical commissioning. I found it useful to develop a framework constructed from the ideas of the theorists I had studied to interpret PPEI as a social practice. I also drew on the work of Shove, Pantzar and Watson (The Dynamics of Social Practice) who have written about what they call the ‘elements’ of materials, competences and meanings in social practice. I focused on five elements or components in my conceptual framework (see diagram below) and then applied them to each of my four bundles or sets of practice which generated a number of themes.

This meant I could think about PPEI as a collective ‘thing’ or entity and see it more than a tick list of performances to meet material policy requirements. A good analogy, drawing on my nursing background, would be giving injections which is very topical with the Coronavirus vaccines. You can develop a checklist for who, when, where and how (materiality) and ensure the competence (skill and know-how) of the practitioner but that focuses on performance. Considering meanings, past experiences and how people are invited and encouraged to have an injection or vaccine views the practice of giving injections in a more holistic way, as an entity that can inform policy. Think about why people may refuse a vaccine for example, and what implications this would have for immunising populations.

What did I find? My findings on trust practices showed participation was about relational ways of engaging and meanings about feeling valued. It applied to both service users and clinical leaders as illustrated by one of the GP Leads Lucy, not her real name. She also talked about needing time for PPEI so I included this as a materiality. Time is a commodity essential for PPEI if it is to be done well.

Lucy:  … well… what I’m going to say is a bit vague, but I really strongly believe in human relationships and relational care and welfare and, you know, that… it really is about meeting people, getting to know them, listening to them, you know, understanding their experience of care, not just collecting bits of data, but it takes time, it takes a lot of time. …we really spent several weeks listening to the patients, finding out how they got into the service, whether they even wanted to be in the service and, you know, what they really wanted, not what we wanted, which was a diagnosis in dementia to put on our register but what they wanted out of it. And you learn so much, but it takes time, it takes lots of time.

 [GP Lead interview, 14/06/16]

A surprise finding was the role of the “awe-inspiring” commissioning support managers. They have a managerial role and work closely with GP Leads on contracts for buying services which includes engaging and involving service users and the public. Their (boundary) encounters with past CoPs for primary care commissioning meant they were trusted by all participants. They built on assets relating to PPEI rather than starting afresh with the new NHS structures following the HASCA.  Nigel, not his real name, the PPEI Lay representative for one of the CCGs, gave an example:

Nigel: … I think the recruiting here’s been pretty good, I mean XXX [Commissioning Support Manager] a good… an excellent example actually, of how… how… there’s… everybody likes XXX, everybody trusts XXX and she gets things done and she just talks the way you would want somebody to talk and that’s pretty general actually, … 

[PPEI Lay representative interview 13, 8/11/16]

For leadership practices, the framework showed the heavy materiality or reification where both CCGs relied on process and procedures that were dictated by NHS England. NHS England is the executive public body which oversees commissioning and how CCGs perform. The materiality was a barrier to participation at Governing Body meetings just with the sheer volume of data that were only made available to the public one week beforehand. A further finding was the importance of roles to give meaning in leadership. For service users, a defined role was important because it had role descriptors and status despite protracted recruitment procedures whereas for the GP there were not the same formal processes. One GP commented that she did not “stand back quick enough”, but when it came to the competence element, another GP talked about “no-one wanting to be low in [the] rating” relative to NHS England CCG requirements.

For learning practices, the participation element highlighted “wearing lots of hats” to align with CCG requirements and the various CoPs. A lay representative might chair a CoP meeting for example, but also have to attend other CoPs because of his/her governance role. And there were differences in formalised learning processes. One CCG focused on formal education and training for the GP Leads but the service users were learning by doing to demonstrate competence. Conversely, the other CCG devoted more time and effort to preparing and supporting the service user representatives in a formalised way with workshops and a conference.

The framework showed unequal relationships for the participation element of partnership practices as the quotation below from Hazel (a pseudonym) illustrates. She, and her service user peers, did not want to be “generic patient people.” Meanings were about seeing you as a person and competence demonstrated by a return on your contribution with feedback that PPEI contributions made a difference to commissioning decisions.  Boundary encounters that furthered partnership practices flagged up belief in the PPEI agenda because CoPs had shown it had worked before.

Hazel: …When they ask us to come along they simply see us as generic patients. Like ‘a person in the street’ but most of us have skills. We have skills in jobs that we have done and they may be skills that they could very much learn from and would help them. And we want to be true partners and give that kind of skill. They haven’t understood that we are not sort of just generic patient people.

[Service users, focus group 3, rural CCG, 27/06/16]