This article follows on from a post I wrote a few months ago: The word DATA makes it sound a lot like numbers! It can be found on the National Institute for Health Research (NIHR) website here. I find it helpful to record my thoughts as I get more involved in this part of research,
A PATIENT PANEL with DIFFERENCE (See post by Prof Andrew Morris, Director of HDR UK)
I have been a member of numerous 'Patient Panels' at Conferences over many years. These Panels are most often at the end of the day or just before lunch. Attendees sometimes seem more intent to get home or are very hungry.
Today, at the Health and Care Data: Improving Lives Through Research conference, we are on FIRST. It is a positive reminder that this is about improving people's lives. It is about setting a tone of partnership. It is about imagining how data can be used to make a difference. It is a lesson for other conferences.
The event in Leeds on 3rd Dec was organised by Health Data Research UK, the National Institute for Health Research and NHS Digital
The Panel consists of Molly Watt, Usability and Accessibility Consultant, Richard Stephens, Chair of the Cancer Consumer Forum and myself. It is chaired by Simon Denegri, OBE, National Director for Patients.
Here are some of issues I think about when considering data...
Think PERSON before HEALTH DATA
I want my health information to be used to help me live well. I would like to think that data on me could help others. I hope that I will be informed about research studies I might wish to join. I want to know the results of any studies I join.
I hope that all of those working with health data remember it is not just information on a spreadsheet - there is a person, their close family and friends as well as those who might just point at them in the street. It could easily be a relative of yours.
It is why involving patients, for example in this Panel, is so important. Getting the perspective of patients and members of the public helps affirm our actions or even challenge our accepted thinking. It can provide an assurance to our work and help unpick some of the moral dilemmas.
HEALTH DATA INFORMATION deserves RESPECT
Many years ago when I was handling information about a young person excluded from schools, I composed it a manner that that protected the individual and them usually hand delivered the letter. It was a highly considered act because of the numerous stages - nowadays it is too easy to just press send without consideration of the consequences.
We need to remind all staff working with data of the importance of being respectful. The speed with which information can be shared has positive or negative repercussions.
My two rules of thumb are: ‘Would I post private information on my front door?’ and ‘How might a tabloid newspaper view and report this information?’
This all comes down to a matter of trust and why we need Patient and Public Involvement for our decision making. It helps to think through the possible responses and reactions for research and possibly to avoid breaches.
Use HEALTH DATA - INTELLIGENTLY
I often feel that there is a risk that data gets collected because it is possible rather than needed. It seems more important to think about what aspects of people's lives need/want improvement and ask what we might gain from the data. Equally, asking data experts how we might gather and use it effectively is a key feature of modern working in research.
We can apply the following comment by Professor Stephen Evans, the medical statistician, to health data research "It is better to measure imprecisely that which is relevant that measure precisely that which is irrelevant" (BMJ Reference below)
Again, it is by engaging the public and offering further opportunities to get actively involved in meaningful dialogue that helps identify the most valuable information.
ENGAGE to INVOLVE
By engaging the public you show how you have been working together, how you have sought to be inclusive and you can demonstrate the impact that these discussions have upon the research.
Involvement can illustrate how patient experience, insight and knowledge have helped shape your thinking, behaviours and actions. It ensures what you are doing is relevant, suitable and appropriate.
Some further notes...
Some further notes...
Health Data Research UK has a Public Advisory Board https://www.hdruk.ac.uk/about/people/public-advisory-board/
The Population Health Research Network in Australia has a policy to actively involve pateit=nts and public https://www.phrn.org.au/for-the-community/consumer-and-community-participation-policy/and includes learning and development opportunities https://www.phrn.org.au/for-the-community/consumer-engagement-training/
BMJ 20th May 1995 Vol 310 Pages 1315-1318 What do I want from health research and researchers when I am a patient?