Some interesting articles
There have been a number of interesting articles recently, I thought it might be good to curate some of these in one place. It seems really important that in the world of Patient and Public Involvement in Research we keep ourselves up to date on data.
*useMYdata, is a movement of patients, carers and relatives supporting the use of personal health data. They are great source of information and have a series of Patient Advocate Stories (1)
You can sign up for regular updates by emailing: firstname.lastname@example.org
If you are new to all of this then Understanding Patient Data (2) is a good place to start.
It explains why, how and what Patient Data is used to improve diagnosis, care and treatment.
They produce some really helpful YouTube animations and other information.
The Association of British Pharmaceutical Industry (ABPI), The National Institute for Health Research (NIHR) and the Association of Medical Research Charities (AMRC) held a Panel at their Pioneering Partnerships meeting
This article, about the event, is a timely reminder that it is about people. (3)
Health Data Research UK (4) brings together those working and interested in the thinking and practice of use patient data. They have a Public Advisory Board. Their News and Features is worth looking at.
The Wellcome Trust has just announced significant funding of £75 million in health data.
Just as the above article talks about people so Wellcome stresses the need for trust in their announcement (5) about the purpose of this investment.
The National Data Guardian, Dame Fiona Caldicott is calling for a public debate on the future relationships between the NHS and those innovating using patient data (6) This follows the results of a poll of over 2000 people.
Of course in all of this, it is really important to give the sources of the data when reporting on research. Where did the data control come from AND have we thanked the patients? The UK Data Service provides a useful shortYouTube clip Cite the Data. (7)
There are many big issues at stake here and I found the comments in this article from Open Democracy (8) a useful guide to the opportunities and risks.
Websites linked above
1. Use My Data: http://usemydata.org/casestudies.php
2. Understanding Patient Data: https://understandingpatientdata.org.uk
3. APBI, NIHR & AMRC: https://pharmaphorum.com/views-analysis-digital/digital-health-isnt-about-big-data-its-about-people/
4. Health Data Research UK: https://www.hdruk.ac.uk
5. Wellcome Trust Funding: https://wellcome.ac.uk/news/new-programme-explore-how-innovation-health-data-can-benefit-everyone
6. National Data Guardian: https://www.gov.uk/government/news/ndg-poll-findings-public-attitudes-to-organisations-innovating-with-nhs-data
7. UK Data Service: https://www.youtube.com/watch?v=cEGYw19FYn8&feature=youtu.be
8. Open Democracy: https://www.opendemocracy.net/en/ournhs/the-nhs-is-embracing-big-data-but-whos-really-benefiting/
I have written other posts on data on this blog and another piece was in the NIHR website