39-Victoria-Street-outside-1920x1233.jpg

HEALTH DATA FOR RESEARCH AND ANALYSIS

Dr. Ben Goldacre is leading a review into the better, broader and safe use of health data for research and analysis for the benefit of patients and the healthcare sector.

The review has been commissioned by the Secretary of State for Health and Care, Matt Hancock, and will complement the forthcoming Data Strategy for Health and Social Care which will set the direction for the use of data in a post-pandemic healthcare system. This is a temporary website designed solely to highlight the terms of reference of the review and to promote engagement opportunities. It will be taken down once the review is completed.

 

TERMS OF REFERENCE

  1. How do we facilitate access to NHS data by researchers, commissioners, and innovators, while preserving patient privacy?

  2. What types of technical platforms, trusted research environments, and data flows are the most efficient, and safe, for which common analytic tasks?

  3. How do we overcome the technical and cultural barriers to achieving this goal, and how can they be rapidly overcome?

  4. Where (with appropriate sensitivity) have current approaches been successful, and where have they struggled?

  5. How do we avoid unhelpful monopolies being asserted over data access for analysis?

  6. What are the right responsibilities and expectations on open and transparent sharing of data and code for arm’s length bodies, clinicians, researchers, research funders, electronic health records and other software vendors, providers of medical services, and innovators? And how do we ensure these are met?

  7. How can we best incentivise and resource practically useful data science by the public and private sectors? What roles must the state perform, and which are best delivered through a mixed economy? How can we ensure true delivery is rewarded?

  8. How significantly do the issues of data quality, completeness, and harmonisation across the system affect the range of research uses of the data available from health and social care? Given the current quality issues, what research is the UK optimally placed to support now, and what changes would be needed to optimise our position in the next 3 years?

  9. If data is made available for secondary research, for example to a company developing new treatments, then how can we prove to patients that privacy is preserved, beyond simple reassurance?

  10. How can data curation best be delivered, cost effectively, to meet these researchers’ needs? We will ensure alignment with Science Research and Evidence (SRE) research priorities and Office for Life Sciences (OLS) (including the data curation programme bid).

  11. What can we take from the successes and best practice in data science, commercial, and open source software development communities?

  12. How do we help the NHS to analyse and use data routinely to improve quality, safety and efficiency?

 

ENGAGEMENT EVENTS

To inform the review, we are seeking input and feedback from a broad range of people working with data across the healthcare system, in different roles, and at different levels of seniority, as well as patient and public representatives. As part of this we will be holding feedback sessions with health data researchers, open source software developers who have worked in the field, operational researchers/NHS analysts, medical research charities, data ethics and privacy experts, patient and public representative groups, and many more. You can find the links to the specific engagement events below.

 

HEALTH DATA RESEARCHERS

01/03/2021, 2-3.30pm [THIS EVENT HAS ALREADY PASSED]

A 90 minute focus group with health data researchers was held on 01/03/2021

DATA ETHICISTS

10/03/2021, 10-11.30am

This is a 90 minute focus group for data ethicists, digital ethics researchers, and privacy specialists. It will be hosted by Dr. Ben Goldacre and the review team. Up to 24 tickets are available. Visit the eventbrite link below to request a ticket. Please note that everyone gets added to the waitlist first so that the team can review and ensure tickets go to a broad range of people from the community. Please help us do this by putting your job title and org in the 'name' fields in eventbrite.

HEALTH & CARE PROFESSIONAL BODIES

10/03/2021, 12-1.30pm

This is a 90 minute focus group for representatives from health and care professional bodies including (but not limited to) the BMA, RCGP, ABPI, AoMRC. It will be hosted by Dr. Ben Goldacre and the review team. Up to 24 tickets are available. Visit the eventbrite link below to request a ticket. Please note that everyone gets added to the waitlist first so that the team can review and ensure tickets go to a broad range of people from the community. Please help us do this by putting your job title and org in the 'name' fields in eventbrite.

OPERATIONAL RESEARCHERS

10/03/2021, 2-3.30pm

This is a 90 minute focus group for operational researchers working in the health and care system. By operational research we mean variation in care analyses that identify opportunities to improve quality, safety and cost-effectiveness of care; modelling around waiting lists, or optimum locations for new services; evaluations of whether new interventions or reorganisations have achieved their clinical or logistic objectives; monitoring volume of activity and cost to ensure value from clinical contracts and more. The session will be hosted by Dr. Ben Goldacre and the review team. Up to 24 tickets are available. Visit the eventbrite link below to request a ticket. Please note that everyone gets added to the waitlist first so that the team can review and ensure tickets go to a broad range of people from the community. Please help us do this by putting your job title and org in the 'name' fields in eventbrite.

SMALL AND MEDIUM-SIZED ENTERPRISES

15/03/2021, 10-11.30am

This is a 90 minute focus group for SMEs providing analytic and data-driven services to health and care providers in England. It will be hosted by Dr. Ben Goldacre and the review team. Up to 24 tickets are available. Visit the eventbrite link below to request a ticket. Please note that everyone gets added to the waitlist first so that the team can review and ensure tickets go to a broad range of people from the community. Please help us do this by putting your job title and org in the 'name' fields in eventbrite.

EXPERT PATIENT & PUBLIC REPRESENTATIVES

19/03/201, 10-11.30am

This is a 90 minute focus group for expert patient and public representatives
to provide insight to Dr. Ben Goldacre and the review team on topics such as: what matters most to individuals in different communities when it comes to data use/data access; current frustrations with data use/access practices and mechanisms; hopes for future change. The review will highlight the need for further in-depth public and patient engagement on any of the specific recommendations made before they are implemented. Visit the eventbrite link below to request a ticket. Please note that everyone gets added to the waitlist first so that the team can review and ensure tickets go to a broad range of people from the community. Please help us do this by putting your job title and org in the 'name' fields in eventbrite.

NHS ANALYSTS

19/03/2021, 12.00-1.30pm

This is a 90 minute focus group for NHS analysts. It will be hosted by Dr. Ben Goldacre and the review team. Up to 24 tickets are available. Visit the eventbrite link below to request a ticket. Please note that everyone gets added to the waitlist first so that the team can review and ensure tickets go to a broad range of people from the community. Please help us do this by putting your job title and org in the 'name' fields in eventbrite.

MEDICAL RESEARCH CHARITIES

19/03/2021, 3.30-5pm

This is a 90 minute focus group for representatives from medical research charities. It will be hosted by Dr. Ben Goldacre and the review team. Up to 24 tickets are available. Visit the eventbrite link below to request a ticket. Please note that everyone gets added to the waitlist first so that the team can review and ensure tickets go to a broad range of people from the community. Please help us do this by putting your job title and org in the 'name' fields in eventbrite.

GET IN TOUCH

We welcome any written feedback on the topics covered by the terms of reference. Detailed case studies are particularly useful. Please note that the email address is "Goldacre Review" as one word @dhsc.gov.uk