What might IMPACT look like?
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This is the question I posed at a workshop at
Coventry and Warwickshire University Hospitals Research and Development Summit 2018
#rdsummit2018 @UHCW_RandD @nhsuhcw
The workshop was publicised as highly interactive and informative. Hopefully is was fun and safe learning with colleagues.
DIFFERENCE
Participants were invited to form small groups. Each group was given a card providing a separate scenario yet with the same question. Each card reflected different aspects of involvement: planning an open day, advising on patient info leaflets, commenting on outcome measures, membership of a trial management group.
The question was simple: What difference might this make?
The responses varied from the principled to the practical. They speak about being more patient friendly and about making a real difference.
It is interesting how we have all become better at explaining the why, the what and even the how of actively involving the public in research as the responses below illustrate.
The second task was about capturing the IMPACT. By some stroke of fortune, I had just attended the workshop led by @julieEbayley and got this lovely quote: “IMPACT is the provable benefits of research in the real world”.
The purpose of the second task was to invite the participants to think about what schools refer to as primary and secondary evidence! In other words how can we demonstrate the difference we have made.
The groups came up with some great examples of the difference involvement might make and the ways in which we might measure the impact.
Involvement in Priority Setting
The difference of involving patient/public in priority setting might be that the focus and direction of travel will change from academic priorities to public. By including patients we might increase public understanding and in turn gives us chance to inform people on benefits for patients.
Patient involvement needs to be done and to show a demonstrable difference.
The IMPACT might be measured by having…
A summary of ideas offered by patients/public and how the priorities changed
An evaluation of how priorities have shifted over time from academic to public ownership
Involvement about Patient Information Leaflets
The difference of involving patient/public might be that our leaflets are more Patient Friendly. We might make less assumptions. It allows researchers to understand what the patient needs e.g. Is it acceptable to the patient?; Does it deliver the right information? The answers might help validate the research and help with answering questions at ethical review.
The IMPACT might be measured by showing…
The before and after versions of the leaflet
Examples of where the medical jargon has been altered to make the language more relevant
Involvement with Outcome Measures
The difference of involving patient/public might be that the measures are more meaningful and have realistic expectations. It might help tackle patient opinions and perceptions on outcomes and increase transparency about the research. It can also help the researcher communicate about the trial in a more friendly manner. Equally, it challenges the researchers by having the patient present.The IMPACT might be measured by having…
A different focus of the actual measures (ie more meaningful, realistic, patient friendly)
Examples of the original measures compared with later version
Involvement on a Trial Study Group
The difference of involving patient/public might be that the Group gains the different perspective - a greater patient relevance. It may help with the explanation of the way a study may need certain design and with locations of data collection. It may assist with the ethics - helping overcome possible risks to patients by already having their views. Involvement in governance allows us to explore how important to patients are adverse events. Yet, how representative of population are they? How do we address the challenge of wider reach and how to communicate/ methods of research- social media may not work for all.
The IMPACT might be measured by having…
Examples of the modification of the study design which came from the patient partner
Personal account from the patient about their involvement
A separate report of the patient & public involvement throughout the trial
Involvement for a Research Open Day
All of these help change the culture: make research relatable; reduce the tunnel vision of academics/ clinical staff; remind us why we do research; cultivate transparency; ensures right people and right place; helps research have more impact; Inspires - provides empathy. It gives us the alternative perspective by involving the people whose lives we are trying to improve. We learn, researchers and public, as to how research effects each other.
The IMPACT might be measured by having…
A Evaluation of the Open Day with feedback from patients
More people getting in touch and demand for the next event
Greater enthusiasm from both public and researchers
If only we had more time….
(The following notes are from the plans for the workshop which we didn't manage to get done)
LEARNING
The third task was intended to get people realising that the gain from patient and public involvement isn’t just to enrich the research. As patients we learn loads of stuff about the science, the questions, and about our own health and well-being.
The Q. was to be: What might patients/public learn from being involved?
I am currently a member of the Steering Group for the PRioRiTY ll - a group of trial methodologists looking at the uncertainties around trial retention. As patient partners we decided to ask ourselves various questions about our involvement at the beginning and half way through the study. We have started to summarise the comments and will continue until completion.
STANDARDS
As we define and record our activity it is important to set our involvement with the National Standards for Public Involvement. This means we can measure our activity with that of others to compare and contrast; to ensure we are effective and to improve.
Participants might like to read about these and reflect on how they might be developed.
REPORTING AND PUBLISHING
Almost all research, begin with search about what is already known - a literature review of published papers.
The final task was intended to ask participants to think about how they might report the patient and public involvement activity within the research, with colleagues and to the wider community.
You may want to consider submitting a document on the NIHR Involve websiteand/or producing a paper for the journal Research Involvement & Engagementjournal
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