Involving patients and the public in health organisations: why it helps to collaborate with a ‘patient leader’


If you, like me, have a job title that is something like ‘PPI Lead’ for your NHS organisation, I feel confident in saying that you are going to spend much of your time feeling daunted. Championing and supporting the remit of ‘Patient and Public Involvement’ (PPI), or indeed its sister agenda ‘Patient Experience’, is complex and big, and often solitary. I understand PPI to be about listening to patients and the public, and our big NHS organisations can appear not set up to do this. In clinical environments, staff do interact with patients of course, but we know that there is a tendency to ‘deliver’ healthcare treatment to the patient rather than collaboratively devise a course of action. With increasing pressures on clinical staff time, we know too that there is less and less time to listen. In research and development, projects are devised by academics or managers whose goals and timescales are set by funders, senior management or academic peers, all of whom require hard, quantifiable outputs and require them fast. 

So in this environment, we PPI leads have to devise ways to slow our colleagues down a little and listen, to pause and consider the patient voice, and when this risks sending these staff off their chosen paths, we have to help them manage these implications. I work in both research and in improvement, and this has meant developing a process and a space for patients and the public to contribute as projects are planned and delivered. So, we now have a PPI planning template that staff can use with members of our Quality & Safety Patient Panel, to think through who should be involved, why, when and how? Sheer numbers of projects make this a large and complex task as there is capacity, awareness-building, and signposting to be developed at every link in the chain. With the researchers and project managers, I need to help them see the value in doing this, encourage them to utilise this resource, and walk them through the process. With the Patient Panel members, I need to ensure they feel supported and able to contribute which raises challenges: practically do we have enough ‘fit and well’ people to attend panel meetings, and are they able to express their viewpoints in a way that will be listened to? Finally, can I, along with panel members, signpost adequately to patients and the public who can get involved in specific projects across the Yorkshire & Humber region? Between us we have many contacts but these relationships have to be built and nurtured over time, and contexts change – we have to keep up. All of this therefore takes time and resources which is hard to come by. Organisations do not speculatively support this work on a big scale and from my experience, it gets done by a fairly frazzled one or two (yes – me included).

For a year now, I have had the good fortune of working with a ‘patient leader’ Marilyn Foster in a model of ‘collaborative leadership’: a term that has been coined and explored by the Kings Fund. In this model, a lay person from the ‘outside’ teams up with someone like me from the ‘inside’ to develop an organisation’s approach to PPI. There are no pre-defined roles for this collaboration – whatever suits the context. In my case, by having regular update meetings with Marilyn acting as a critical friend, she has helped to:

  1. Keep me outwardly focused: as an insider I am prone to tailor my work to meet the organisation’s objectives. This is good to an extent, but in good PPI, the remit extends beyond organisational boundaries and I appreciate being reminded of the end-goal which is always to improve things for patients and the public.
  2. Build intelligence about the wider community: Marilyn knows more about the needs of patients and the public, and the groups that currently exist in our communities, than I do as she is immersed in these through her numerous roles on health-related groups and a Parish Council.
  3. Gain senior support Marilyn has helped make the case to our senior teams for raising the profile of this work. By adding a knowledgeable lay voice to the mix, our senior managers listen.

And Marilyn reports her own benefits from this collaboration. For many years since leaving employment as a counsellor with the NHS, she has contributed to panels, boards and groups, working as an ‘outsider’. She feels passionately about positively changing the way the health service works to support patient and public involvement, but has at times also felt isolation in these roles. We discussed what she has gained from our collaboration as including:

  1. Knowledge of the inside. As a lay person, it is easier to be effective if you know what is going on within the organisations you are trying to support, and can appreciate and empathise with those colleagues who work within the different areas.
  2. Recognition: Our collaborative pairing has been formally recognised, and Marilyn has been invited into the Improvement Academy as the first ‘patient expert improvement fellow’, recognition that can be shared with other patient leaders. Marilyn knows there are others like her working in isolation to enhance involvement from the outside and wishes our model to be passed on. Together we are exploring how others from across the region, working with other health organisations, can become ‘patient expert fellows’ and form a patient network which, with staff fellows, can build momentum and collective approaches to change.
  3. A voice: within this long-term relationship, Marilyn is invited to contribute to discussion with staff at all levels of our organisation. For someone who so keenly wants to make a difference, this is inclusive and empowering.

In short there appear to be some crucial benefits to the model of collaborative pairing that we think are worth sharing, specifically the commitment to learning and developing together. Practically this happens through regular ‘checking-in’ together to reflect on progress and challenges and identify opportunities where we can help each-other challenge and progress the status quo together. We bring to these ‘check-ins’ a lot of mutual respect and understanding for the challenges we each face in our respective roles. We are both limited in our time and these ‘check-ins’ can be hard to prioritise as other commitments (deadlines, our own health) often seem more urgent. But it is because PPI can so easily be de-railed by what seem at the time to be the more important challenges of life, that the strength and momentum provided by the collaboration is increasingly important for us to succeed with our endeavours and move forward together.