A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis





NIHR Public Recruitment
(Publication date 2019-03-29)

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 here .

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Farr Institute Future Leaders
(Publication date 2019-03-29)

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 transparency.

The complete study is available here .

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Data sharing - clinical encounters
(Publication date 2019-03-29)

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

here

.

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Connected Health Cities
(Publication date 2019-03-15)

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 here .

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NHS Digital’s CEO on current data policy
(Publication date 2019-03-15)

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 here .

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Patient engagement in big data initiatives
(Publication date 2019-03-14)

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.

http://www.lse.ac.uk/health-policy/research/Patient-engagement-in-big-data-initiatives

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Patient engagement in big data initiatives
(Publication date 2019-03-14)

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.

http://www.lse.ac.uk/health-policy/research/Patient-engagement-in-big-data-initiatives

[Read/Print the full story here]

Northern Ireland Cancer Patient Experience Survey
(Publication date 2019-01-24)

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.


The NI CPES 2018 gave patients the opportunity to give detailed confidential feedback on their experience of care across the five Health and Social Care Trusts in Northern Ireland, allowing comparison with the experience of cancer care in the England CPES 2017, enabling local monitoring of progress on cancer care, and providing evidence that can be used to drive quality improvements.

The survey is available at http://www.publichealth.hscni.net/publications/northern-ireland-cancer-patient-experience-survey-2018

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Public views on the use of patient data
(Publication date 2019-01-18)

'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 reservations]


https://wellcomeopenresearch.org/articles/3-6/v2

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NHS Digital – National Data Opt-out for England –
(Publication date 2019-01-17)

The latest figures for the Opt-out in England were published on 16 January.


These show that in December there were a further 250 opt-outs, bringing the total to 1,637,810. The details are here https://digital.nhs.uk/data-and-information/publications/statistical/national-data-opt-out

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Cancer Patient Experience Survey (CPES)
(Publication date 2019-01-15)

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 – '

Improving cancer care is a priority in our
#NHSLongTermPlan & learning from the experiences of patients is crucial to shape services. The national data opt-out will not apply to nat patient experience surveys including #CPES but normal survey opt-out arrangements still apply'.

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Health Data Research UK (HDR UK) event – Frontiers
(Publication date 2019-01-15)

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

https://www.eventbrite.co.uk/e/webinar-frontiers-meeting-for-patients-public-and-charities-tickets-54343014419

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Understanding Patient Data – update on next steps
(Publication date 2019-01-15)

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

UPD's next steps

and there is a summary of their 11 December engagement event here

https://understandingpatientdata.org.uk/news/update-event

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Barriers to the release of human tissue for clinic
(Publication date 2019-01-15)

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

https://jcp.bmj.com/content/72/1/52

though please note that it is not freely available.

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National Data Guardian (NDG) statutory footing
(Publication date 2019-01-08)

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 and safeguarded.'

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.'

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National Data Opt-out – latest statistics
(Publication date 2019-01-08)

The latest statistics were released by NHS Digital on Thursday, 20 December.


They show an increase by just 260 – a marked difference on previous months. This follows the first full month of GPs no longer recording Type 2 opt-outs (if GPs are still recording Type 2 opt-outs, they will not be included in the figures).

Full details are here https://digital.nhs.uk/data-and-information/publications/statistical/national-data-opt-out

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