7 April 2015
We have an innovative and possibly unique approach to Patient and Public Involvement (PPI) in the West. Four local health networks, NIHR CLAHRC West, the West of England Academic Health Science Network, the Clinical Research Network: West of England and Bristol Health Partners, have agreed to use a single PPI strategy group and team to guide, co-ordinate and develop PPI projects and expertise in the region. This PPI function is run through People in Health West of England.
This approach to PPI will be evaluated as part of the research and evaluation agenda of CLAHRC West. From mapping existing PPI resources and groups, training professionals and the public and creating easier access to involvement opportunities, the PPI team has had a busy first year.
Hildegard Dumper, PPI Manager at People in Health West of England, reflects on the journey over the last two years to develop this shared resource.
All health professionals know that the health economy needs to work in a more flexible and holistic way and reject working in silos. The patient and public involvement (PPI) function is ideally placed to put this in practice. Tasked with ensuring good patient experience, PPI leads need to work across services, workstreams and systems in order to develop imaginative and innovative ways to address complex problems.
In January 2013, a new vision for PPI in the West was born. At public events in January and November 2013, held by WEAHSN, NIHR CLAHRC West, CRN: West of England, Bristol Health Partners and the University of the West of England (UWE) on what patients and the public wanted for PPI, there was a strong call to avoid duplication.
The vision that emerged was to have a shared PPI resource for the research partners.
One way to do this would be to pool resources to have a joint PPI team. This would help avoid the weaknesses inherent in existing approaches to PPI. Instead of resources being concentrated on a number of isolated, part-time posts, a shared team would provide a supportive environment for PPI staff and avoid duplication: duplication of patient forums, advisory groups and other PPI related activities that may result in each organisation chasing a small cohort of the public and patients to involve them in similar activities.
There was also a growing sense of consultation fatigue amongst patients and members of the public. Just over a year later, it started to take shape.
And nearly a year on from those first steps, it is timely to reflect on how this has worked in practice, to look at the challenges and also the benefits.
As the host organisation for the PPI partnership, UWE took a lead in developing the shared approach. In February 2014, WEAHSN, being further down the line than its partners in terms of organisational capacity, recruited a PPI Manager to start putting in place this shared vision.
As PPI Manager, my first task was to establish a PPI Strategy Group made up of members of the public who could participate in the governance structures of each partner and act as a critical friend. This was a new, regional venture and it was essential that these positions, which would be paid, were promoted as widely as possible throughout the region with a fair and transparent selection process. Eight members of the public were selected, bringing with them a diversity of health perspectives and geographical distribution. In addition to the eight public contributors, the four organisational partners (CRN, CLAHRC West, WEAHSN, Bristol Health Partners) are represented on the strategy group, as well as Healthwatch and the Research Design Service. In June a CLAHRC West Research Fellow was appointed, and in July a full-time Administrator.
The team started off based in the WEAHSN offices before moving to shared offices with CRN and CLAHRC West.
A structural challenge is that all the partners are hosted through a number of different arrangements. The academic lead for the initiative is based at UWE. WEAHSN is hosted by Royal United Hospitals (RUH) Bath. CLAHRC West is hosted by University Hospitals Bristol (UH Bristol) while many of its staff are employed by the University of Bristol. Bristol Health Partners is hosted by UH Bristol, though some staff are seconded from University of Bristol, Bristol Clinical Commissioning Group and North Bristol Trust. The CRN is hosted by UH Bristol. Both CRN and CLAHRC West are arms of the NIHR and so need to meet their corporate requirements.
Within the PPI team, I am employed by RUH Bath, the Administrator by UH Bristol and the Research Fellow, UWE. A new PPI Facilitator is being recruited who will be an employee of UH Bristol. What this means in practice is that I have to access and operate in the different HR systems of UH Bristol, UWE and University of Bristol. To manage the team budget, I have to access the financial systems of RUH, UH Bristol, UWE, and University of Bristol. When we moved our offices we had to re-create a new set of files and folders on completely different computer drives. Decisions such as what email address to use take on major significance – do we go with WEAHSN, UHB, University of Bristol, NIHR and so on.
There is a culture of sharing learning. We realise that we are trailblazing and there is no blueprint for us to follow. The systems and processes for implementing a partnership approach such as this, need to be developed from scratch and this is what we are doing.
The value of a shared PPI strategy group has already been felt. The public contributors are influencing the culture and methods of the partner organisations in a strategic way. They are part of the governance arrangements of each of the partners and at an operational level we have together adopted good practice standards, over the payment of public contributors, the process of selection and management of the different roles that public contributors take on.
Public contributors get mutual support from being part of a shared journey. The structures of the NHS are very complicated and can be overwhelming to anyone coming from outside. They meet separately as a group as well as with representatives of the partnership.
What we also have is a wider reach. The shared PPI strategy group brings together public contributors and partners from across the West. We share contacts, information, prototypes and resources.
Linked to this we have mapped existing patient groups across the region that have been set up for research as well as service improvement so that we can broker relationships between health professionals and patient groups and in this way address the issue of consultation fatigue.
We are developing our website as a shared resource and have a programme of regular events and workshops to spread good practice.
Having an organisation like UWE to host and drive through this initiative especially at a time when the four partners were either forming or being reformed, is essential.
The initiative could not have worked without the willingness of all those responsible for the systems and processes in the different partner organisations and host organisations – RUH, UH Bristol, UWE and so on. Individuals responsible for the financial, administrative and HR systems in these organisations have to jump through hoops to make it work and are the hidden heroines and heroes.
Another essential ingredient is the commitment to the vision demonstrated by those in leadership positions, especially at chief executive and director level in all the partners. Their encouragement behind the scenes as well as their public affirmation of support for this joint way of working has been inspirational.
Overwhelmingly, however, it is the drive to make a difference from all who are involved in the project – public contributors, staff, researchers, and many others, that has made this work. There is a shared acceptance of the need for a cultural change in the NHS towards being more patient and public centric. All those involved have recognised that joint working in this way can make a significant contribution to making this change happen.
Professor David Evans and patient Cathy Rice talk about the approach the West is taking to co-ordinate patient and public involvement (PPI) in health research across the region. This presentation is from the launch of the NIHR CLAHRC West launch in November 2014.