What is the VALUE of us working together to improve research for better treatment, care and services?
On Monday, 9th December, I helped facilitate an event in Manchester that set out to explore The Value of Working Together in Research. Hosted by North West People in Research Forum http://www.northwestpeopleinresearchforum.org the participants came from a broad spectrum of community voluntary groups, Local Healthwatch, NHS as well as the more usual patients/service users, carers and researchers. Twitter feed was #TVWT @nwpirf
The event was organised by Bela Starling, Irene McGill, Melanie Chapman and Joanne Simpson.
I was struck by how different people had viewed the word VALUE. Bela and I wondered at one point whether VALUE was too vague yet we immediately agreed that it allowed for a much wider interpretation and exploration.
Dr Katherine Froggart, Senior Lecturer at the Faculty of Health at Lancaster University talked about relationships, the working with and using an action research approach to involvement, a community conversation and invited us to look to the future with research that looks at the whole person and their wider needs from their perspective.
Katherine stressed the importance of addressing practical worthwhile research, is done in a participatory way and that it is part of a continual responsive process.
Prof Ann Jacoby, Professor of Public Health and Policy, University of Liverpool talked about the PiiAF http://piiaf.org.uk and having an ethical approach - the right to be involved (normative), the improvement for research (substantive) and the values around involvement (process).
Prof Carrol Gamble, Professor of Medical Statistics, University of Liverpool talked about how involvement is valued by Chief Investigators and Representatives of public and patients and that the incorporation of patients, carers and public should always be in research proposals.
Dr Philip Bell, lay representative, was interviewed by Bela Starling, spoke about his experiences of being on a variety of groups and committees and the importance of paying travel and other expenses as an absolute mimimum.
MY OWN THOUGHTS
As the day progressed and since I have begun to identify three broad strands that I heard about the term VALUE. The first was the was that of our 'morals' - our attitude to each other and the manner in which we work. The second centred around the 'benefit' - the impact and gain for each other. The third, I believe was about 'worth' - the value we place on recognising people's contribution.
MORALS - i.e. the way we conduct ourselves when working together was raised by a number of speakers and in feedback. The importance of openness from both patients/public and from researchers.
One of the main reasons for involvement is to let in fresh air and to have perspectives based on experiences and different knowledge. It is our morals that will help improve the culture and climate towards better person-centred research based on actual experience with the aim of better diagnosis, treatment and care.
BENEFITS - i.e. the difference that has been made through involvement. An increasing amount is written about the impact of involvement on the ideas, design and delivery of research yet less information is gathered on the positive difference to our lives.
It is highly unlikely that I would have taken on any of the roles and positions I have held unless I had become involved in research as a patient. Similarly I have not been to see my doctor for over 8 years as I have more of a sense of my own health and well being.
This years NIHR Annual Report quotes Chris Peters, a trial participant, "Research and becoming actively in research, has changed the way I manage my condition and has led to me being more fit and healthy”. iewer.zmags.com/publication/26f799ac#/26f799ac/18
There are therefore benefits for us as people in learning more about our illness and our general well being. Additionally we are gaining new information and developing different skills.
Have researchers had similar experiences of benefitting personally from actively involving people?
WORTH - i.e. the recognition of people for their efforts. First and foremost a simple thanks, a card, a letter expressing gratitude. Payment of travel and any out of pocket expenses in cash is a strong favourite. A cup of tea and some biscuits can be helpful. Each is a simple acknowledgement of the contribution being offered.
Better still is a regular update of progress outlining what happened as a result of being involved and how that made a difference to the research.
The cost of involving people in any further activities can be worked out using the excellent Cost Calculator produced by the Mental Health Research Network and INVOLVE can be found at http://www.invo.org.uk/resource-centre/involvement-cost-calculator/
The general altruism of the public knows virtually no bounds as is evident in the 637,976 people who took part in NIHR approved studies last year. However people have a right to know what happened as a result of their participation in research.
In the Final Report of the EFGCP Multi-Stakeholder Roundtable Meeting on “Sharing Clinical Trial Data in the Interest of Patients and Research”, participant Ingrid Klingmann said:
"We have to do more to get back to individual patients invoked in clinical trials, we owe that to patients for their willingness to contribute to the trial. At present the concept is not embedded in the proposal regulation - but as a fundamental right it should be."
MY TWEETS on the DAY
Here are the Tweets that I posted about VALUE and on reflection I now feel that I could have batched them more effectively into the headings I have since identified. This has been an interesting experiment of comparing the difference between my tweets during an event and the potentially more thoughtful reflection.
I was tweeting my views rather than necessarily reflecting the day.
My ten tweets, on the day, were WORKING TOGETHER in RESEARCH should aim to have these VALUES...
1. OPENNESS to different perspectives and alternate ways of working
2. PRESENCE at meetings, events and conferences of the people for whom the research is intended
3. RESPECTING each other's views and opinions even when we disagree with each other
4. LISTENING to each other's needs and working together to address them
5. LEARNING from each other's experience, knowledge and skills to develop better solutions
6. DIVERSITY to ensure that research meets the actual needs of those intended to benefit
7. EQUALITY to ensure that as many people as possible get the opportunity to take part in research studies
8. MUTUALITY as a set of common goals to improve research ideas, design, delivery, dissemination and application
9. CHOICE to take part in research studies and get actively involved
10. IMPROVEMENT in treatments, care and services for people's health and wellbeing