Using healthcare data to improve diagnosis and treatment of patients with a huge range of medical conditions is right at the heart of NCIMI’s mission.
But what are the ethical and legal implications of using anonymous patient data to develop medical technology?
NCIMI has been working closely with Future Care Capital (FCC) and Anthony Collins Solicitors LLP to undertake an analysis of the legal provisions and issues impacting research and commercial usage of healthcare data.
On this episode of NCIMI Voices, Claire talks to Annemarie Naylor, Director of Policy and Strategy at FCC, who was instrumental in developing the report - Research and Commercial Use of Healthcare Data: a review of the legal issues surrounding the potential ownership and exploitation of health data.
And to bring a patient perspective, we have Neil McClements who is CEO of the charity Haemochromatosis UK.
Together, they discuss the opportunities and challenges of working with patient data for the purposes of discovery.
About Haemochromatosis UK
Haemochromatosis is a genetic condition where a person absorbs too much iron from the diet, creating “iron overload”. Neil talks about how use of patient data is as important as donating blood – something his service users know a lot about, since regular blood donation is an effective treatment for people living with Haemochromatosis.
Impact of Iron Overload – report launched at Parliament in late 2018 : https://www.haemochromatosis.org.uk/the-impact-of-iron-overload
State of the Nation – our most recent report delivered to the All Party Parliamentary Group on GH : https://www.haemochromatosis.org.uk/state-of-the-nation-2020https://www.medsci.ox.ac.uk/research/networks/national-consortium-of-intelligent-medical-imaging
Twitter: https://twitter.com/ncimimaging
LinkedIn page: https://www.linkedin.com/company/42963713/admin/
NCIMI’s approach to ethics and data:
https://www.medsci.ox.ac.uk/research/networks/national-consortium-of-intelligent-medical-imaging/ncimi-and-ethics
Blog by Claire and Annemarie – https://futurecarecapital.org.uk/latest/use-of-healthcare-data-in-uncertain-times
Full report here: https://futurecarecapital.org.uk/research/research-and-commercial-use-of-healthcare-data. (Also attached)
Future Care Capital (FCC) is an independent charity shaping the future of health and social care.
They drive innovation and improvement through leading edge research and policy insights, and by bringing together policy makers and practitioners.
https://futurecarecapital.org.uk/
https://twitter.com/FCC_UK/