A movement for patients, relatives and carers.
Harnessing the patient voice to build confidence in the use of
patient data for research and analysis
National Institute for Health Research - Public member recruitment 2019
– England focus
The National Institute for Health Research (NIHR) coordinating centres,
Central Commissioning Facility (CCF) and NIHR Evaluation, Trials and
Studies Coordinating Centre (NETSCC) are currently looking for patients,
carers and members of the public with lived experience of health, services
and social care to join their national and regional committees. Applicants
should have a broad interest in health and social care issues beyond their
own lived experience.
The deadline for applications is Friday 26 April, at 13:00.
Details of the committees and information on how to apply are available
Farr Institute's 'Future Leaders' Cohort - A vision for inclusive and
transparent health data science in the UK and beyond - UK focus
This paper - which is the work of the first cohort of the Farr Institute's
'Future Leaders' - identifies the most important barriers to achieving
higher productivity in health data science. Drawing on previous research,
domain expertise, and theory it also aims at outlining how to go about
overcoming these barriers while applying values of inclusivity and
The complete study is available
NHS Digital - HSJ story about plan to share "rich detail of clinical
encounters" - England focus
This article appeared in the Health Service Journal on 22 March. Its focus
is on an NHS Digital consultation document that shows potential plans to
collect unprecedented "granular" details about patients' care nationwide,
which would be shared throughout the NHS and beyond.
The document indicates that new information standards will be used to
increase the amount of patient-level data available for research and
planning. NHS Digital will collect more "raw" patient data centrally to
provide "increased granularity" for researchers and planners.
NHS Digital says that the document is "not a statement of intent" but a
description of what "we can potentially do with data".
The full article is
Connected Health Cities -
Creating a Learning Health System to inform the Great North Care Record
- Tuesday, 2 April 2019, 13:00 - 17:00, Newcastle upon Tyne
This event will share the outputs, benefits and most importantly the
learning from a range of data sharing projects to support both direct care
and research from the Connected Health Cities programme. In their own
words, this is "a look back at some of the work we have done as part of
Connected Health Cities. Stories of technical, ethical and social
challenges all around data sharing patient care and research".
Further information and registration is
Health Service Journal - Article about the view of NHS Digital's CEO on
current data policy
Talking at a recent event in London, NHS Digital's chief executive Sarah
Wilkinson has warned a confused policy on data sharing risks sowing "deep
and almost irreparable" public mistrust. The existing mistrust is already
"slowing us down" on sharing data to improve care, with clinicians in
particular "anxious about sharing it with the health research systems
because they don't feel they can be completely confident in its uses". The
National Data Opt-out is described as not "sophisticated enough".
The full article is available
The London School of Economics Department of Health Policy and Imperial
College London Institute of Global Health Innovation host event on the role
of patient engagement in big data initiatives.
The Northern Ireland Cancer Patient Experience Survey (NI CPES) 2018
follows on from the successful delivery of the survey in Northern Ireland
in 2015, and similar surveys in England, Scotland and Wales.
'Giving something back': A systematic review and ethical enquiry into
public views on the use of patient data for research in the United Kingdom
and the Republic of Ireland [version 2; referees: 2 approved with
The latest figures for the Opt-out in England were published on 16 January.
Steve Brine (Parliamentary under Secretary of State for Primary Care &
Public Health) has confirmed that CPES will continue. This is good news, as
it looked as though, due to the Opt-out, CPES would cease.
Quotation from the Minister’s Twitter account on 10 January – '
An update about this event, for which details have been sent previously.
There has been so much interest that HDR UK has now decided to live stream.
If you would like to join the webinar details can be found here
Understanding Patient Data has now published information about its next steps. Key areas will be: public engagement and attitudes, developing new resources, partnerships and communities, relevant policy and regulation development. Details are here
and there is a summary of their 11 December engagement event here
The BMJ recently published an article by the National Cancer Research
Institute’s Cellular Molecular Pathology (CM-Path) initiative, on the
barriers to the release of human tissue for clinical trials research in the
UK. The article is here
though please note that it is not freely available.
On Thursday, 20 December the NDG Act received Royal Assent -
'it gives the role a permanent basis in law and allows the NDG to issue
statutory guidance about how health and adult social care data is used
The NDG's office recognised that '
so many individuals and organisations contributed to the NDG Act
passing. Great to see support from across political parties, research
charities, patient organisations, professional bodies and a wide range
of health and care bodies for this important role for public trust.'
The latest statistics were released by NHS Digital on Thursday, 20