Developing partnerships with the public to increase the delivery of research studies
This was a workshop I facilitated on February 13th organised by Ros Yu, Patient and Public Involvement Manager for the Joint Research Office - a partnership between University College London, UCL Hospitals NHS Foundation Trust and the Royal Free Hampstead NHS Trust. The workshop is part of the wider programme of Building Research Partnerships and was open to researchers and the public. The notes below capture the essence of the discussions and are written mainly to advise research professionals.
Involving patients, carers and the public has become a standard and expected element in almost all NHS research. Increasingly, we see examples of patients assisting with the prioritisation of research ideas, helping to shape the research questions and providing insight from their experiences.
The main examples offered here mainly follow a traditional model of Involving the public and introduces ideas for thinking differently in future. in the meantime it has made a lot of research more relevant, improved research outcomes and helped changed the whole environment of research.
But what about the RECRUITMENT?
There are an increasing number of examples of where involvement has made a significant difference to the delivery of research - the action of getting a study up and running in line with the measurable goals of ‘time and target’. There have been few opportunities to sit down and discuss the issues.
The workshop looked at IMPROVING RECRUITMENT under three headings:
HINDSIGHT - How might the public help us understand why has a clinical research or other study has been unable to recruit, so far?
INSIGHT – How might the experience of patients, carers or the perspective of the public to aid the delivery of research?
FORESIGHT – How might we think more effectively about the ‘person’ who will take part in the today’s research and the needs/wants of research participants for the future?
The public can offer valuable advice that can assist researchers in getting sufficient numbers but cannot take part in promoting a particular study. Guidance on this was produced jointly by INVOLVE and the National Research Ethics Service.
Recruiting people to research studies is needed if a statistical significance is to be seen when analysing the results. The targets of recruiting to time and target exist to ensure that research studies in the NHS are carried out in a timely fashion so that the findings can be applied for NHS patients. It was unacceptable that, in the past, it often took months or years to get a trial up and running.
The workshop began with discussion on…HINDSIGHT
How might the public help us understand why the study been unable to recruit, so far?
Hindsight is always twenty-twenty. We can all look back, see things more clearly, to learn from our experiences but in the midst of trying to get a research study delivered alongside daily work, asking for help can be a good idea. By asking how the public might help allows for a more positive and non-threatening approach. It was Thomas Fuller who said, “A stumble may prevent a fall" (1).
Some researchers held a small focus group to help consider basically two questions:
- What advice might you offer on both the STUDY and the PROCESS?
- Are there any simple changes in the way something is explained that might make a difference?
Some researchers carried out simple surveys, others invited patients who were not trial participants to become members of the Trial Management Group. The key is having an external viewpoint that brings a pairs of fresh eyes especially from the patient and carer perspective.
Each approach offers a helpful way of gathering the 'customer' view and using those to alter the way the study is explained to patients. The language research uses is often very different from that of the public in general so it is always worth checking not just the Patient Information Leaflet but the way the trial is communicated on posters and in person.
The second area of discussion was on INSIGHT - for recruitment
Talking with a group of patients/carers specifically about recruitment during the research planning stage is a good idea. It does not matter whether it is a telephone conference, a Facebook conversation, a focus group or meeting in a coffee house.
A quote from Joseph Campbell says, “Where you stumble, there the treasure lies” (2) yet by having a plan to talk to people you can avoid the ‘stumble’.
Patients and carers offer the wisdom borne of experience. The diagnosis of any disease leaves many people in a confused state and therefore talk of research may be a step too far. It will inevitably raise the importance of the 'carer' who is too often left out of the discussions. The person supporting the patient can do more than reminding the study participant of appointments, medication and other trial requirements. The carer’s view can be a rich source of additional evidence that you might wish to gather. Thinking about the patient, their lives and needs at the point when research participation is being mentioned can therefore help recruitment.
People affected by a condition have knowledge of where best to inform people about a research study. They know their clinics and GP practices as well as the parking problems at the local Trust. This worthwhile intelligence can be the difference between a study meeting the target for recruitment and failure for a very expensive process.
Patients have their own highly complex network of contacts with other patients, through self-help/support groups and in their own communities. This can be a good way of spreading the word about research studies. Different communities, age groups, cultures have their own added value to contribute on values, perceptions and language.
“The best way to keep something bad from happening is to see it ahead of time... and you can't see it if you refuse to face the possibility” (3), William S Burroughs.
Values and Attitudes
There are many of us who are actively involved who neither want nor need to see involvement in every part of research. We want to know that the culture has changed, that the research community is thinking of people not subjects and that we are working together in a shared enterprise of improving people’s health.
So, think person, think patient, think volunteer!
- What would I feel like?
- Would members of my family and friends take part?
- Could I describe and explain it to someone on the High Street?
- Would I feel informed?
Have a Plan
Have a practical plan of how you intend to work with patients, carers and the public. Don’t leave it to chance!
- CONTEXT – Describe the research and why you want people to participate
- PURPOSE – Explain what you want/need from people and how you will be working together - consultation or partnership
- IMPACT – Outline how the discussion might help improve research
- BENEFIT – Record and inform each other of the benefits
One of the first points to be raised at any meeting will be that researchers should have spoken to patients and carers at a much earlier stage. I would agree!
Discussions with a patient community at the earliest stage are more likely to reach the right priorities, come up with the most relevant questions, identify appropriate outcome measures, improve the lay summary and help shape an effective plan for involving people.
Participants were given a handout of observations made by Ignatius Maguire a lay representative on a major funding body for government research in Northern Ireland.
The evidence of the impact is growing in public awareness of research, through to the design, delivery and dissemination of studies. Other examples can be found in Making the Difference report and ongoing information can be found at Simon Denegri's Lay Review.
Think to the Future
How might we use social media and new technologies to improve the way we explain research, communicate about studies and publish results?
CF Unite - Cystic Fibrosis - Research, care and patients working together
ShiftMS is a social media site for young people with Multiple Sclerosis
Cell Slider - You, too, can read pathology slides
MOOCs - Massive Open Online Courses
MOOCs - Massive Open Online Courses
Thanks to everyone who attended the workshop. Please use the tabs at the top of the Blog to find further sources of information and follow me @ppisqueek on Twitter
What Participants thought of the Workshop
Summary of the Evaluations
The most valuable aspects of workshop were…
- Ways of involving the public in research
- Considering other avenues when approaching the public
- Discussion on research focus v participants focus
- Learning about PPI
- Meeting people in same situation
- Whole event was useful and informative
- Foresight and Ignatius’ advice
- Thinking about PPI in my own research
- Thinking of various populations that can be involved and how they differ
- All areas
- Group discussions – although not always enough lay people
- Good to hear other’s experiences of recruiting participants
- How to engage people in research
- Exchange of ideas with others involved
Participants intend to apply the learning…
- In my own research
- Have an improved sense of where I might find support
- By hopefully writing a grant application with a great PPI section and designing a protocol which answers what patient want to know
- Assist me in setting up a clinical trials group – a ‘general trials focus group’
- Follow Ignatius points & use past tense
- Have much more varied and purposeful involvement
- Better research and enjoy it more!
- Foresight - Organise web groups
- Change communication materials to incorporate feedback
- Will involve patients at an earlier stage of development
- PPI will be more at the forefront of my mind when thinking about grant applications
- Engage the patient group throughout the research
- Send emails and update focus group members about research to help them feel more engaged and understand their involvement
- Involve public earlier in project design
© Derek C Stewart
1. Thomas Fuller – English Clergyman and Scholar http://www.yuni.com/quotes/fuller.html
2. "Reflections on the Art of Living: A Joseph Campbell Companion" by Diane K. Osbon, 1991, Harper Collins, NY.
3. Willian S Burroughs Author of The Naked Lunch http://www.goodreads.com/quotes/134938-the-best-way-to-keep-something-bad-from-happening-is