The following personal reflections are my attempt to record why I take part in various committees, the role of those committees and why these are different.
- I am very keen to see that people are told about research opportunities that are relevant to them in the NHS and are informed about the results of studies in language that is clear and easy to understand. (PARTICIPATION in Research)
- I am particularly committed to ensure that people are actively involved in all aspects of research (design, delivery and dissemination) and believe that research which asks questions that are relevant and appropriate to patient experience are more likely to recruit and then be used to improve NHS treatment and care. (Active INVOLVEMENT in Research)
- I am highly supportive of engaging the public in discussions about science and research as a means of bridging the knowledge gap especially as biomedical studies get more complex. (ENGAGEMENT in Research and Science)
It is in my opinion as easy as PIE - Participation, Involvement and Engagement. For too long we have seen these separate slices of the pie as entirely different. It is time to bring them together.
Thoughts on Board membership
I am conscious that a Comprehensive Local Research Network Board has a focus around the delivery of research studies that subsequently narrows the scope of what I want to achieve within my areas of interest though it is still possible to help inform, form and influence by contributing in discussions.
The following notes attempt to capture some of the areas that the presence of a ‘patient / lay representative / adviser’ can help to make happen. We can contribute to
Changing the culture - encouraging people to work in partnership both as a board and across organisations for research; helping make research part of the normal patient journey; attempting to make the research language more understandable.
Being open and accountable – seeking clarification about the role of the board; about the finances; about research activity across the three counties; enquiring how we are telling others about the work being done across the CLRN.
Reminding of purpose – inviting the board to remember why we are doing what we are doing; seeking to ensure that patients are being told about research opportunities; providing a lay opinion – an external pair of eyes; a ‘consumer voice’ to the proceedings.
Making connections – helping to make links and being in touch with local patient groups and organisations; giving presentations and talks locally about participation in studies, active involvement in research and engaging with communities across the region; making strategic links with national priorities for research and involvement especially to improve patient access to research through local NHS services
The principles and values that I have begun to identify are:
· Supportive of high quality research in the NHS
· Respecting others
· Promoting transparency
· Commitment to equality and diversity
· Offering ideas and seeking solutions
· Challenging complacency
I would welcome comment on these observations and would be pleased to receive other people’s views.
I will be adding - Some Questions to Ask - soon.