Learning4Involvement in Practice

Real Learning in Public Involvement for Research

Last year, INVOLVE produced a briefing on the values and principles for learning and development. The briefing reminds us of the key concepts of respect, support, transparency, responsiveness, fairness of opportunity and accountability which are central for this type of learning.

• What does this mean for the public and researchers learning and developing their thinking around involvement in research? 

• What might facilitators need to consider when planning, preparing and providing workshops and events?

 At Bec and Derek (I am the Derek and Bec can be also be found at TwoCan Associates) we are developing our Facilitating Facilitators course in partnership with UCL BRC. It has enabled us to think more closely about what and how we facilitate to enable meaningful involvement. Join us #becandderek

Enjoyable: Public involvement should be agreeable and informative. It should encourage a sense of discovery and plug into the enquiring mind. The activities should be about problem solving and shared endeavour. 

Face to Face: An essential characteristic for good involvement - for researchers to actually meet with patients and for us to meet with those working in research. Later on it is acceptable to communicate through email or social media. It is a relationship and that should be built on mutual respect.

Hands on: This is 'experiential learning'. We learn from each other and between different meetings. We are not trying to be researchers but we are keen to understand things when we need to learn them.

Interactive: We need to learn from those working in and with communities. opportunity to meet and work with different people. For example, I began this journey in the world of cancer but have learned more through the interaction with other patient communities.

Relevant - This is how we make it of value to research. Those who are facilitating need to ask searching questions to ensure that all participants gain from the learning.

  

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Guest BLOG: Everyone learns about #WhyWeDoResearch

A departure from the norm - A guest post from Bob Phillips and Jess Morgan which from a good active involvement standpoint uses the words 'cake and biscuits'. Yet how might the public help further... 

“More doctors should really know about research!” we often hear. 

Research, well conducted and methodologically valid, is a key way to make things better for all of us involved in health care, patients, families, health care professionals and the tax paying public. In this blog, we want to share with you something we’re doing to increase what doctors in training know about research!

Yorkshire centrally organises a series of training days for doctors undertaking their specialist training in paediatrics. Every year, a two-day course runs on three different occasions with the objective of taking a group of trainee paediatricians from starting to think about #WhyWeDoResearch, through generating a (pretend) study, undertaking it, analysing the (pretend) data it collects and presenting the results in a mini-conference.

Cake or biscuits are central to the sessions, as are honest, warts-and-all descriptions of what it’s like to be a clinically active academic doctor. Day one begins with an exploration of the reasons why we undertake research, what an active role in running research studies means, and some of the reasons people chose not to be directly involved. This blends into a session walking though the processes of protocol creating, ethics in research, application filling in and the pains of funding. 

The afternoon needs the participants to break into teams, and generate a raft of research ideas, debate them and come up with one to take forward. They then draw up a skeleton protocol, and overnight the study is magically* undertaken.

Bushy tailed and sparkly eyed, day two confronts the twin horrors of statistical testing and  qualitative analysis, to give a core grounding in both schools of data assessment. The importance of targeted dissemination is underlined, and the rest of the day is a flurry of activity, analysing, describing, drawing conclusions and creating poster presentations and elevator pitches for the conference that occurs in the final hour of the course.

The imaginary studies undertaken have included a study on the role of group-B streptococcal screening in reducing neonatal mortality, a trial of medications for reflux disease in infants, and a mixed-methods study of the value of ‘early’ vs. ‘late’ placement of central lines in the treatment of acute lymphoblastic leukaemia. Participant feedback has included “makes the boring stuff really interesting”, and the highlights were identified as biscuits, teaching style and beginning to understand why research really matters.

The course could develop further – and we’d love to hear how we could incorporate other elements of the ‘real’ research process in this fantastical world that gets built and polished in 48 hours. Can we have Patient and Public Involvement? Could a funding body be assembled? Would it be good to get people to write an information sheet, or review an ethics application?

This two-day intensive course takes paediatricians in training from “Huh?” to “Our study shows …” through parametric tests, grounded theory and minimally important differences. It enthuses those who had a nodding acquaintance with study design and fires some of the curious to leap into research with vigour. Could your training programme include something about #WhyWeDoResearch? Could we help you?

Thank you to Bob Phillips and Jess Morgan

You can join in the twitter conversation here or read his Storify about BecandDerek at the @NIHR_TRAINEES 

* = the session leaders create falsified data, based on the results of similar studies that have been undertaken previously. It has been quite difficult at times to persuade people that they actually are imaginary & not to believe them.