Finding an authentic way to lead Patient and Public Involvement with the help of a Patient Leader


The Improvement Academy primarily supports healthcare staff across the region to deliver safer, higher quality services for their patients. As the Academy Lead for Patient and Public Engagement (PPE), I have a remit to enhance the voice of patients themselves within these efforts. The scope and complexity of the task, has led me away from a ‘neat’ approach, where all our improvement projects follow standardised procedures for PPE that can be performance managed, to something more organic and, as I am increasingly appreciating, more authentic.

Patients and the public who give their time to PPE are acutely suspicious of being drafted in to perform a ‘tick-box exercise’ so that NHS professionals (often managers and researchers) feel they have satisfied their organizations’ requirements for involving people. We could have established such a process for the Improvement Academy – probably a patient panel where our project staff could bring ideas, get some comments (hopefully nothing too taxing likely to send the project timescale off course) and go away and get on with the project. If each project followed this procedure, then we would know we were doing good PPE. However, this approach seemed limited and instead I have had the good fortune of working with a ‘patient leader’, Marilyn Foster, to think through something more authentic. Supported by the Improvement Academy and the AHSN, Marilyn and I have been taking part in the Kings Fund Programme ‘Leading Collaboratively with Patients, Citizens and Communities’. There is nothing like the input of a knowledgeable, passionate member of the public to throw away the performance management tendencies we can all get wrapped up in, and replace with something more directed at outcomes for those who use services. Thanks to this process, I have now revised my aims – rather than trying to lead a standardised approach to PPE, I work on capturing the transferable principles that we develop organically in individual projects, so that I can develop and articulate ‘models’ of PPE to wider improvement community that become guidance, not a blueprint, for others. I do not claim that nobody else has done the things in these models before but want to share our particular insights because such learning and spread is a key part of IA philosophy.

I call the first model ‘Panel Liaison’. This is about how to work effectively with the patient panels that already exist to provide advice and support to those who manage and deliver quality and safety improvement projects. So far, IA staff have worked with the panels of the Yorkshire Quality & Safety Research Team and the Bradford University Faculty of Health Studies to consider project proposals, objectives, methods, practicalities and indicators of success.  We have learnt that working with such panels for this purpose requires careful planning – what can they helpfully comment on? How can ideas be effectively discussed within an allocated agenda slot? Is there scope for any of the members to be involved in the project in other ways, or are they likely to know others who could be more suitable to be involved?  Without adequate consideration to such issues, and the development of a good relationship with panel convenors and chairs, the experience for all involved is likely to be unhelpful, and worse still, resentment and a feeling of ‘use and abuse’ can set in. If due consideration is given to these issues such panels are an excellent resource of dedicated, passionate and knowledgeable people who can really enhance the success of a project.

I call the second model ‘Site liaison’. This is about how to get patient and public engagement into the on-going process of an improvement project in the organization setting where it is taking place.  We are developing this model through two patient-safety related projects – HUSH Safety Huddles and CARS. These projects are about improvements being developed at particular hospital sites so it is most valuable to involve people associated with these sites, rather than to only seek the input of a panel which may have no direct interest in them. We have started working with patient experience teams in these Trusts, to make them aware of the projects’ aims in improving services for patients, and to help identify and put us in touch with people who can work with the project teams to give the patient perspective. In both these projects, patient experience teams are supporting us to run workshops for members of the public with an interest in their hospitals. Without their insights into the local context, such workshops would be impossible to set up. We aim for a reciprocal relationship with patient experience teams who have an interest in improving services for patients. Ultimately, as we build our relationships with these teams, their knowledge could be used to inform improvement initiatives before they are set up.

As with ‘Panel liaison’, we have identified some principles for working with Trusts to achieve these aims. Most importantly, involvement activities cannot be rushed.  Patient experience staff are extremely busy and requests for their support in recruiting people and running workshops on their sites, should be carefully planned. The purpose of involving their patient community should be clearly articulated, the recruitment materials provided, and a smooth and seamless procedure established for reimbursing people for their expenses and time.  If workshops are held there should be a process established, with the help of the Trusts where possible, for keeping people informed of how the projects progress, and crucially how their input has had influence. As the names I give to both models indicate, the key to success is ‘liaison’ – communication and relationship building. This is time-consuming and involves much leg-work but without this commitment to the task, and this is extremely difficult in our busy working lives, people (patients and the staff we ask to help) will feel used and abused, and the relationships so crucial for on-going engagement, will break down.

I am pleased with our approach to developing these models – it feels like we are making a difference to our improvement projects, whilst learning some principles, and building some relationships that we can use in the future and share with others. There is great scope for capturing many more models either used directly by me, or by the many improvement colleagues throughout the region who are also enhancing their PPE and have principles to share. We will use the website to share these models.

But our patient leader, Marilyn, quite rightly requests that we take things a step further and contribute more broadly to the evolving landscape of support for patients and the public who are increasingly being asked to contribute to this agenda. Both the models detailed above focus on guidance for staff in accessing patients and the public more effectively. There also needs to be an effort by all the organizations who rely on this resource of people, to consider some coordination of groups and panels that can work with multiple organizations. Those dedicated people keen to input into the improvement of health services need to be regarded as a precious resource, and our next priority as a regional improvement organization is to consider how we can contribute to this challenge.