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Working with patients and the public to realise the benefits of sharing health data for research to improve care and outcomes for patients
Funder: NIHR Biomedical Research Centre at University College London Hospitals NHS Foundation Trust and University College London
The ambition of the Government Life Sciences industrial strategy is for genomic data (which consists of a complete set of a person’s DNA) and other datasets to be used to improve the discovery and targeting of treatment and to ensure that patients receive a precise diagnosis across a range of medical conditions. The ‘AboutMe’ Initiative, led by researchers and clinicians at UCL and UCLH, aims to embed research into routine medical care by linking patients’ DNA results to their electronic health records. The vision is to ensure every piece of information collected from patients as part of their routine care in hospital can be used to improve quality of care and safety for patients through research, for example by supporting development of new treatments, helping us target treatments more precisely, and where appropriate returning relevant genetic information back to patients.
A main objective is to build trust among patients and the public and other key stakeholders. We have run preliminary focus groups with patients and the public to identify their views around governance and accountability, security and confidentiality of patient data, consent, return of information to patients, and concerns around partnerships between researchers and pharmaceutical companies or other private companies. We are working with patients, their relatives and carers, hospital staff and the public to enable meaningful and impactful PPI (by that we mean interacting and listening to the public to shape research with mutual benefit) in the use of patient data for research and innovation and to ensure transparency and openness across all aspects of AboutMe.
For more information on Patient and Public Engagement for the AboutMe Initiative, please contact: Natalie Fitzpatrick n.fitzpatrick@ucl.ac.uk
Patient Data and Innovation: Engaging Patients in a Conversation about Data Ownership, Value and Use of Data
The recent launch of a new EPIC electronic health records system at UCLH heralds a great opportunity to better realise the value of routinely collected patient data for patient benefit. It is widely agreed that patients should be involved in guiding how their data should be used. We will deliver a programme of interactive engagement events with UCLH patients and the public to unpack the often-opaque aspects of health data ownership, value and use, and to understand public and patients’ views, expectations and concerns around use of data at UCLH. The engagement events will drive a series of in-depth workshops leading to a number of defined outputs developed in partnership with, or co-designed by, patients, including development of an operational model to guide and support academics/others interested in using clinical data for research, publication of a formal statement setting out patient views around patient involvement in the governance and oversight of use of data for research at UCLH, and linked to the work of the Office for Life Sciences on what constitutes a fair partnership in the NHS, we will explore and develop a set of principles (“roadmap”) for collaborating with commercial organisations and industry at UCLH.
The engagement events and workshops will run from October 2019 until July 2020 and are open to patients and all members of the public. Further details and the draft programme will be announced here soon.
UCLH Research Open Day, July 2019
The AboutMe team hosted an 'Improve Wellness through Health Data' stall for patients, researchers and the public at the recent UCLH Research Open day on July 4th. Activities included “genetics bingo” to explore the randomness of inheriting genetic traits, a genetics versus lifestyle card game to demonstrate the heart disease risk continuum, and participants used pompoms to explore heart disease risk in a family. Activities were featured in the UCLH BRC short highlight video of the day (see around the 39 second mark https://twitter.com/UCLHresearch/status/1148554091154542592?s=20).
THIN Advisory Committee
The Health Improvement Network (THIN) is a primary care research database containing data from around 500 UK general practices. Anonymised, coded data are available for research to academic and commercial groups. THIN is keen to maximise the research value of the free text in primary care data (which is not currently available for research) and is developing tools to enable researchers to utilize the free text while ensuring the confidentiality of patients.
The THIN Advisory Committee (Chaired by Dr Anoop Shah) will advise on operations of the THIN database and future improvements, ensure that it is used in a way that maximises its research value, is in the best interests of the public and protects the rights of the data subjects, and advise on potential risks (e.g. safety or re-identification of patients). The committee, consisting of THIN management employed by Cegedim, researchers, data scientists, NHS doctors including GPs, and members of the public, met for the first time at UCL on 24 May 2019 and will meet 3 times a year. For more information, contact Anoop Shah (a.shah@ucl.ac.uk).
Schools engagement programme
IHI has welcomed GCSE and A level students from schools across London to spend a week with our staff and students to learn more about what we do as part of their school summer work placements since 2016. Among other things, students have learnt about the life-cycle of data, how data is collected and used for research, public engagement in research, and cybersecurity and clinical systems engineering.
Researchers also participate in science festivals and visit schools to educate primary and secondary school aged students on how data can be used to improve health. For more information, contact Natalie Fitzpatrick (n.fitzpatrick@ucl.ac.uk).