Different perspectives, same goals

This issue of JIP includes an opinion piece from a lay colleague who shares his personal insights and experiences of involvement in clinical and research collaborations. Not only does it give a flavour of some of the many and varied ways patients and the public can contribute to improving patient outcomes, it also highlights some of the challenges and considerations of partnership working.

In my role as Coordinator of a national service user group which works with research teams trying to reduce infections and antimicrobial resistance, I too have experienced the diversity of opportunities for public involvement, and the potential benefits to patients through collaboration. The Service User Research Forum (SURF) was formed in 2007 and has contributed to over 35 studies and applications for funding – activities range from involvement as advisory group members, to peer interviewers, to co-applicants running bespoke work packages. Originally a Department of Health funded project, SURF was formed with the aim of taking collaborations between clinicians, academics and the public forward, supporting researchers in integrating public involvement and facilitating members of the public to get involved. SURF is now supported and hosted by the Richard Wells Research Centre at the University of West London. Our involvement extends far further than research most commonly associated with public involvement, such as patient experience studies and recruitment drives for clinical trials, into areas including technological interventions for staff, student training and assessment and the development of the epic3 National Evidence-Based Guidelines for Preventing Healthcare-Associated Infections in NHS Hospitals in England (Loveday et al., 2014). Involvement for each and every project has required creativity and a willingness to embrace changes to established ways of working to try and ensure involvement activities are genuinely beneficial.

In my experience, public involvement has been most successful when research teams embrace partnership working – including lay colleagues as team members and co-applicants, involving them in the early stages of project design and ensuring systems and support are in place to facilitate their involvement. This includes clear channels of communication, properly defined roles and responsibilities and adequate and respectful reimbursement for time and effort.

There are now many publications and mechanisms of support for public involvement, and many experienced facilitators. National Involvement Standards have been prepared by the National Involvement Partnership (National Involvement Partnership, 2015). The document is an excellent introduction for individuals from all disciplines and helps us consider why and how involvement should be undertaken. For those involved in research, the National Institute for Health Research’s (NIHR) INVOLVE organisation produces a wealth of open access guidance and case studies on public involvement and those applying for NIHR grants in England can ask for support from their local Research Design Service Patient and Public Involvement advisor (NIHR, RDS). All those involved in research, guideline development or service improvement are welcome to contact us at SURF (SURF).

During SURF’s lifetime we have moved from a position where members of the public are merely being asked to comment on the language of a lay summary to a place where lay colleagues are contributing a wealth of experience and insight in identifying areas for research, developing funding applications and working as peer researchers. A current partnership, in which SURF is involved, is The James Lind Alliance Priority Setting Partnership for HCAIs. This is led by MRSA Action UK and University College London Hospital and sees patients placed at the heart of a UK-wide research priority setting exercise.

Studies, such as Crowe et al. (2015), have long shown that there is a mismatch between the research priorities of patients, clinicians and the research community. James Lind Alliance (JLA) partnerships seek to overcome this and develop shared research priorities which will truly improve practice and care. The JLA was established in 2004 and is named after James Lind who is recognised as a pioneer of clinical trials through his work to identify treatment for scurvy over 250 years ago (JLA). JLA partnerships are between patients, clinicians and academics. They follow the tried and tested methods of the JLA and the process is overseen by an experienced advisor. The priority setting partnership for HCAIs was formed earlier this year with the aim of developing and publishing a list of the key UK research priorities for HCAIs.

During the first stage of the process we are inviting everyone with an interest in HCAIs to submit their top research questions relating to prevention, identification and treatment of HCAIs. Once this stage is complete all questions are reviewed and categorised. A working group of patients, clinicians and academics will then meet to agree a top 10 (or thereabouts) list of the most important unanswered research questions. This will be published on The UK Database of Uncertainties about the Effects of Treatments (UK DUETS) which is accessible to all those interested in research. We hope that this exercise will support research into HCAIs, ensuring it addresses the issues most meaningful to patients and the public, as well as clinicians and academics, and that funders will take these well informed and robust priorities into account in their calls for research and funding decisions. If you live or work in the UK we would urge you to be part of this important activity by taking time over the summer to complete the survey, and to consider becoming part of the process as it develops. You can find information about how to access this survey in the Diary Section of this journal.

The JLA partnership illustrates first-hand how the landscape of public involvement in HCAIs is changing and clinicians, academics and patients are now able to work in partnership towards shared goals. However, it is not all positive. In his opinion piece, Creelman makes some very pertinent comments about individual and organisational barriers to making involvement work (Creelman, 2015). We recognise that systems and processes are not always conducive to a culture of involvement and that partnership working does require extra project and staff time. Finding the right person with the right skills and experience to avoid tokenism is an issue and appropriate support and training needs careful consideration. Creelman (2015) underlines this when he comments how if the subject matter is too complex, or too little of the overall picture is presented, meaningful engagement is impossible to achieve. A highly contentious issue is lack of funds to reimburse people for their time. The demands of proper involvement are such that people should not be expected to give up their time for free. A common criticism of public involvement is that lay colleagues are not ‘representative’ and we need to make involvement more accessible to people from all walks of life – offering adequate reimbursement is one way of working towards this. The challenge of how public involvement is properly supported is one we face in all of our organisations, particularly in advance of securing research grants. Creelman asks ‘Public Involvement, Benefit or Burden?’ and this is undeniably one of a number of burdensome issues for research teams. However, balanced against the many advantages of recognising patients as partners in our shared goal of reducing infections, public involvement is definitely a benefit.