Involving End Users in Your Research

Involving the end users in the design and management of research projects has become increasingly important . It is no longer acceptable to run projects in which participants don’t have a voice. But how does this work? How do you identify potential users? What are the potential pitfalls or problems, and what benefits can you expect? The latest Grants Factory session took two very different case studies and looked at the difficulties –but also the significant benefits – of involving users in research.

Case Study One: Research for Patient Benefit

Annette King

The National Institute for Health Research (NIHR) has been a strong advocate for ‘patient and public involvement’ (PPI), and has established an advisory group, INVOLVE, to advocate greater participation. Users should be engaged at all stages of a project as ‘active partners’, and not just as ‘subjects’. This engagement can range from ‘consultation’, to ‘collaboration’, to ‘user-led’, where the service users themselves set the research agenda.

Annette King described a ‘collaborative’ project funded by the NIHR’s Research for Patient Benefit scheme. The project, led by Eve Hutton of Canterbury Christ Church, was a study into the effectiveness of an education programme for parents and teachers responsible for the postural care needs of disabled children. This had been developed with users, including the parents and children themselves. One such was Judi Mortimore, who had helped the project team in identifying the research questions, had been active in the management of the project, had developed participant information resources and techniques, and had helped to disseminate the findings.

With her input, the team had been far more effective at engaging with those who would benefit from the research. Neither Annette nor Judi shied away from the fact that, at times, the relationship had been difficult: there had been misunderstandings and differences of opinion. Nevertheless, the research was stronger and more robust as a result, and the findings more useful and applicable.

Case Study Two: Age Discrimination

Dr Hannah Swift

The second case study looked at a different kind of user: those who commission and use the research. Dr Hannah Swift, a Research Associate working with Prof Dominic Abrams, explained how a small, straightforward piece of research commissioned by Age Concern a decade ago had led to a broad portfolio of interrelated projects for Age UK, the Equality and Human Rights Commission, the European Social Survey, and the Department for Work and Pensions. This portfolio had been incredibly fruitful for both the academics and the users of the research.

Prof Dominic Abrams

Throughout the process, Prof Abrams and his team had to be both reactive and proactive. On the one hand, they had to react to specific requests from external bodies, and consider the benefit (and dangers) of working with them.  On the other, they had to make contact with organisations that might be interested in their work, finding the most appropriate people, and making the links.

Whilst their experience had been positive, Abrams and Swift highlighted some issues that need to be considered before entering into collaborations with external users:

• What do they want to get out of the relationship?
•  What do you want to get from it? Access to data? Or further opportunities?
•  Make sure you protect your intellectual property.
• Make sure that you get all necessary ethical approvals.
• What is the timeframe? Deadlines are often tighter than you may be used to.
• How will you deal with any conflict outcomes? In other words, what will you do if the research doesn’t tell the ‘story’ that the user was hoping for?
• How will you get the research into a ‘useable’ form? The user will probably want the findings in a more accessible and useable form than an academic article.
• What will happen if the research is not used? The organisation might be happy with your work, but the report may be shelved for political or other reasons. What will you do?
• What will happen after the report is written and the relationship is formally finished?
• Make sure you have more than one contact within the organisation. People move on, and you don’t want the relationship to dwindle when they do.

Above all, for both of these case studies, it was clear that good communication, openness and honesty were key. Expectations should be managed, and both sides need to be clear about what can and can’t be done.

Slides from the session will be available on the Research Services website shortly.

Tips on Applying to the NIHR

Dr Gail Gilchrist

One of the highlights - for me - of last week's NIHR Information Day was the talk given by the University of Greenwich's Dr Gail Gilchrist. She was refreshingly frank about her experience of applying to the Research for Patient Benefit (RfPB) scheme, and gave us a really useful overview of the benefits, the essential elements of a good application, the issues faced, and the differences between RfPB and other research programmes.

Benefits of RfPB

For Gilchrist, the benefits of RfPB were that it was 'responsive mode', i.e. it wasn't restricted to specific topics, unlike some other areas of NIHR funding. Moreover, it encouraged proposals for a wide range of areas, including social care and new interventions. She also thought - anecdotally - that it was a necessary first step to getting larger funding from the NIHR.

Essential Elements of a Good Application

Gilchrist prefaced this by stating that she was still waiting to hear back on the outcome of her application, so that whilst she believed that her application had the essential elements, there was no guarantee of success. She deferred to Prof Chris Salisbury (Bristol) who clearly set out the three key factors of good NIHR applications:



As with many other funders, applicants need to make sure:

• That the research question is important;
• That getting an answer is feasible;
• That the methodology for answering the question is sound and appropriate;
• That it can be understood by both clinicians, methodologists, patients and the public;
• That the team is appropriate, multidisciplinary, and sufficiently experienced.

Issues

Gilchrist made it clear that applying to the RfPB was no walk in the park. She had faced a number of issues, including:

• The challenge of building an appropriate, multidisciplinary team;
• Ensuring access to NHS sites;
• Meaningfully engaging with service users;
• Developing local partnerships/steering committees/advisory groups;
• Estimating the numbers of participants necessary;
• Deciding on the most appropriate form of dissemination.

Lessons Learnt

She came out of the process older and wiser. For those about to start, she suggested the following:

• Get all relevant people on board before writing. It takes time to get all the people registered, with the necessary CVs uploaded and approved. Remember, public and patient involvement (PPI) is crucial, but it can be time consuming. In addition, working with large NHS organisations isn't always straightforward, which leads on to the second point:
• Don't leave it until the last minute. 
• Be aware of word count, and make sure to save your draft application regularly.
• Review and revise. Peer and lay review is incredibly helpful. 

Differences between NIHR and other Funders

Finally, she rounded off her session by highlighting some key differences between NIHR and other forms of funding:

• PPI is crucial;
• Research should have strong impact or translation potential;
• Awards are made to the NHS, not the university;
• NIHR Networks need to be involved. 

Patient & Public Involvement

At the NIHR Day last week Amanda Bates (Research Design Service South East) and Alison Ford (NIHR Evaluation, Trials and Studies Coordinating Centre) gave an overview of why patients and the public should be involved in the design and management of a research project.

Why involve patients and the public?
Whilst it's an integral and necessary part of any NIHR application, involving those who will be affected by the research has considerable benefits, and you shouldn't see it as just a box-ticking exercise. Patient and public involvement (PPI) could provide different perspectives on the research, and demonstrate the relevance of your research to lives of those affected. It may give you privileged access to valuable experience and expertise, and would demonstrate your willingness to be transparent in your research.

So who are they?
Patients or the public could be anyone; we are all fit into this category. It depends on the focus of your research, of course, but could include:

• people who provide unpaid care or support;
• parents or guardians;
• people who use health and social care services;
• people with disabilities;
• members of the public who might be targeted by health promotion, public health or social care;
• groups asking for research because they believe that they have been exposed to potentially harmful substances or products;
• organisations that represent people who use health and social care services.

So how do I involve them?
PPI can happen at any time of the research process, from planning (even right at the beginning, when you're identifying the research topic, through to the prioritisation process or designing the project), to conducting the research, collecting the data, analysing it, reporting and disseminating the findings. In terms of getting external people on board, there are a number of ways of identifying those who might be interested:

• asking patients in clinics, or finding a clinician who will ask for you;
• using 'word of mouth' amongst colleagues; 
• via patient or user groups at local GP practices;
• holding an open event;
• finding local support groups, charities etc;
• via the RDS SE (see below).

You should make sure that they know what is expected of them, and that they are properly reimbursed for their time. You should allow time for positive working relationships to develop, and should ensure that the research environment is physically - and intellectually - accessible. For example, make sure that those with physical disabilities can access meetings, and that you avoid or explain any specific language or jargon.

If you want to explore PPI further, you should get in touch with RDS SE. You can even apply for a small award (£350) that will help with the costs of involving people in the design of a study at an early stage.