How do researchers use electronic health records (EHR) for research?
Using EHR data from millions of patients is not easy. EHR data are very large in size, are complex and need a lot of work before they can be analysed properly to answer important research questions. Data are created by doctors and nurses for the care of patients as their primary focus and as a result, they might not always be readily usable for research. Researchers need to build special tools, referred to as algorithms that transform them into a format that can be analysed. For example, a common problem researchers face is to identify all patients that have had a heart attack or diabetes. At the moment, this is done in a manual way that is very inefficient, slow and prone to error. Additionally, while many researchers work on the same algorithms, they do not share their work between because there is no mechanism for doing so. As a result, many of them replicate each other’s work without knowing.
We have adopted special methods and infrastructure to establish and support a research platform consisting of 'research ready' variables extracted from linked electronic health records from hospitals, GP surgeries and national databases. With the correct approvals, this resource can be accessed by researchers who wish to carry out innovative, high-impact research to improve public health and delivery of healthcare services. We also provide high quality training for researchers to learn about how to work with big health data for research.
What happens to your health data?
How are patient data used and in what form are they held?
Health records that are linked together for research purposes have all of the patient’s personal information or 'identifiers' removed and replaced with a code that is a long set of randomly assigned numbers and letters joined together; we call this ‘pseudonymisation’. This is the best way for researchers at the Institute to link different sets of data together without patient confidentiality being compromised.
The Institute abides by a core set of principles and its researchers undertake comprehensive training that is designed to ensure security and compliance to these principles and full confidentiality for patients.
None of the linked data sets contains individuals' names, dates of birth or full addresses, and it is extremely difficult to decode the data without considerable expertise and computing power.
What are the risks to my privacy or safety?
Whenever we share details about ourselves, whether this is in a bank, shop, online service or the NHS, some of this information is stored and linked. UCL IHI takes strenuous measures to ensure that patient information is safe and confidential. All data are stripped of identifying information before arriving at the Institute and strict governance frameworks are in place so that the data are safely used and privacy is protected.
In the extremely rare and unlikely case that patient information was accessed inappropriately, this would result in severe penalties for both the individual and the organisation in which the data are held.
How is the public’s interest being protected when health data is used for commercial research?
Previous public engagement work has shown that the public has less trust in commercial companies and that there is some anxiety about potential ‘selling’ of data to big business for profit. At the same time, there is a general acknowledgement that pharmaceutical companies produce the drugs which will eventually benefit the public and that research partnerships between the health services and such companies are therefore necessary.
Most people are willing to accept these uses, provided the data are only used within a controlled setting. This means that commercial research can pay for processing and accessing of relevant data, but would not be able to buy that data. This also highlights the need for clear agreements around the expected payback for public health that such commercial research generates.
What about non-medical data?
We are not primarily concerned with non-medical records but we collaborate with approved and appropriate agencies in non-medical fields such as the Administrative Data Research Network, funded by the Economic and Social Research Council.
How does the Institute ensure that the maximum benefit for society will come from this type of research at the minimum possible risk?
Public engagement is a core component of the work of the Institute and we ensure that the public’s voice is listened to both at the strategic level and as part of individual project teams. We are committed to conducting and supporting research that has the potential to benefit patients and wider society.
We work closely with NHS service professionals, policy makers and other stakeholders to ensure that proposed studies are relevant, and that the findings are made available to key decision-makers for proper consideration.
What do the public think about sharing of health data for research?
A number of studies have so far been undertaken to get a sense of what patients and the wider public think about data linkage for health research. These studies included the expectations and concerns that people had, and their views on risks and benefits.
Whilst some people are against sharing their records for any purposes, and are free to opt out, on balance most citizens consider that it is in the best interest of society for health records to be used responsibly for research in the public interest, so long as safeguards are in place.
In addition, there is much support for the NHS as an organisation, and for the idea of making better use of existing health records for research that may help patients, the NHS itself and society as a whole. Research consistently points towards high levels of trust in academic health researchers and clinicians.
A range of excellent online resources are available for patients and the public and researchers interested in public involvement and engagement in research. Some of these are listed below. For more advice or an informal discussion about public involvement and engagement in research, or on how to involve patients and the public in your research at UCL, please contact: Natalie Fitzpatrick, Public Engagement Coordinator.
For patients and the public
Understanding Patient Data was set up to support better conversations about the uses of health information including how data are used. Their website features a series of videos, blogs, tools and resources to help people who want to understand more about how health and care data is used, including for research.
NIHR INVOLVE was set up to support active public involvement in NHS, public health and social care research. INVOLVE has published standards to provide people with clear, concise benchmarks for effective public involvement alongside indicators against which improvement can be monitored. For a description of public engagement in research see: https://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/) and to access their guide for how to get involved in research, go to: https://www.invo.org.uk/posttypepublication/public-information-pack-pip-booklet-1-a-quick-guide/
Health Data Research UK (HDR UK) is the national institute for health data science. HDR UK established a Public Advisory Board in January 2019 to advise on the delivery of their mission, principles and future strategy, in particular around making sure that health data is used responsibly for research and innovation. The Public Advisory Board meets every two months and its members provide input on projects in between meetings.
Creating Connections brings together UCL staff and postgraduate students with representatives from community organisations, charities, residents’ groups, social enterprises and statutory organisations, with the aim of finding ways to work together. It is organised by UCL’s Public Engagement Unit, UCLU’s Volunteering Services Unit, and Camden Shares. For more information and to join the mailing list, go to: http://uclu.org/services/volunteering-at-uclu/creating-connection
The UCL Public Engagement Unit offers a range of advice and resources including training and support in public engagement and practical toolkits about running your own engagement projects. For more information, see: https://www.ucl.ac.uk/public-engagement.
INVOLVE is funded by the NIHR to support public involvement in NHS, public health and social care research. The INVOLVE Resource Centre contains links to all INVOLVE publications, databases and other online resources on public involvement in research.
UCLH Biomedical Research Centre Public Engagement Unit supports the research community by providing training, advice and signposting to further resources. For more information on sources of help see https://www.uclhospitals.brc.nihr.ac.uk/investigators/ppi
The National Coordinating Centre for Public Engagement (NCCPE) was established to support Universities across the UK to increase the quantity and quality of their public engagement activity. Practical advice and resources are available on their website at: https://www.publicengagement.ac.uk/
Public engagement communities
UCL SLMS Community of Engagers The UCL Community of Engagers Advisory Group has established a Community of Engagers to enable researchers to get to know others working in Public Involvement and Engagement across the UCL School of Life and Medical Sciences (SLMS), and to encourage partnerships and sharing of expertise, ensure wider knowledge and access to support and resources and to further develop and embed public engagement and involvement best practices across the school. To join the Community of Engagers, email Dr Andi Skilton at: firstname.lastname@example.org
Creating Connections brings together UCL staff and postgraduate students with representatives from community organisations, charities, residents’ groups, social enterprises and statutory o rganisations, with the aim of finding ways to work together. It is organised by UCL’s Public Engagement Unit, UCLU’s Volunteering Services Unit, and Camden Shares. For more information and to join the mailing list, go to: http://uclu.org/services/volunteering-at-uclu/creating-connections
Research Involvement and Engagement is an open access interdisciplinary, health and social care journal focussing on patient and wider involvement and engagement in research, at all stages. The journal is co-produced by all key stakeholders, including patients, academics, policy makers and service users. For more information about the journal, see: www.researchinvolvement.com
YouTube course – Talking science: An introduction to science communication. Greg Foot, a Science Presenter on the BBC TV & Radio has created a series of 10 videos during which he introduces tips & techniques to help you talk with the public about anything from the world of science, technology, engineering and maths. The course has a focus on helping practising scientists communicate their work with non-experts https://www.youtube.com/playlist?list=PLD160RWuGai9oUnAVRq-GD2njEo1XHadF