use MY data working with the National Disease Registration Service

The National Disease Registration Service (NDRS) is publishing a series of data stories and asking use MY data to comment on each one, bringing a patient perspective to the use of patient data.

The first data story focusses on the Registration of Complex Rare Diseases – Exemplars in Rheumatology (RECORDER) project, highlighting how patient data has been used to understand howpeople with rare autoimmune diseases have been affected during the COVID-19 pandemic.

David Snelson, Advisory Group Member, reviewed the data story and commented:

“This research is very important for people with a rare disease. When someone is diagnosed with a rare disease, they are often shocked and worried. Research like this helps clinicians to provide the right treatment and to advise the patient on how to manage their condition. Often people with a rare disease join a patient support group and research like this can also help the group to advise its members.

This study shows what can be done when trusted organisations use our health data. When data from a whole population is used and different parts of our health data are linked together, we get a better picture of the most important issues.”

Understanding Patient Data have published new research on what the public thinks about businesses and organisations using data held by the NHS.

The research shows that members of the public support the use of NHS held health data by third parties, only when there is benefit to patients across the UK, rather than for short term financial gain for the NHS. Benefits to patients includes things like improving disease detection or developing new medicines and treatments.

Dr. Natalie Banner, who leads Understanding Patient Data said This research shows that people are excited by the idea that NHS held data could be used to improve care for patients, and help everyone live longer, healthier lives. At the same time, this data is about people, so the public should have a say in how its used. The Government must act now or risk damaging the trust people have in the NHS.

The report NHS data Maximising its impact on the health and wealth of the United Kingdom was published on 5 February.

It acknowledges that Citizens have not been involved in setting the rules & principles by which decisions about data use are made and pushes for this to change.

The report has a section Public opinion and engagement. For the report, a series of interviews were conducted. Patients, the public and health care professionals were not consulted. The report addresses this by saying:

Interviewees included representatives from government, the NHS, academia, industry (technology and life sciences), research institutions, charities and data privacy organisations. We have not consulted the public or healthcare professionals for the purposes of this paper, as we chose to focus on experts in the data policy and governance space. Part of the rationale of the paper is to understand which issues should be explored with the public and how to do so.

Researchers from the DataLab, housed at the University of Oxford, have this month published a paper discussing the Barriers to working with National Health Service Englands Open Data.

The authors use their experiences of developing and maintaining OpenPrescribing.net, an online tool to help users explore NHS primary care prescribing open data, to describe what kind of barriers are encountered when trying to access the data and suggest solutions that would make the data more usable and impactful.

NHS Digital - Research bulletin - England focus

The recent NHS Digitals November research bulletin highlights a "clinical review that explores how other organisations use patient-level data released through our Data Access Request Service (DARS)". The report outlines five main areas of impact and breaks down how different organisations use the patient data held by NHS Digital.

The bulletin also has links to NHS Digitals statistical publications.

Understanding Patient Data has published an update blog. Alongside providing an update on recent activities and the growing team, the blog highlights three key areas that the 2020 strategy will focus on:

Growing our partnerships to support the people best placed to have conversations about how patient data is used (including health professionals, charities and patient groups)

Ensuring the views of patients, health professionals and the public are heard by the people who set national policy and make decisions about how patient data is managed and accessed

Understanding and promoting the views of diverse groups of people, to prevent the concerns of underrepresented groups being neglected in decisions how patient data is used.

The field of data-driven technologies in healthcare has seen massive expansion over the past few years. With this comes huge potential to improve patient experience and care, if these technologies are harnessed in the right way. Central to making this vision a reality is smart regulation. Unfortunately, it is often viewed as a burden or barrier to innovation.

To remedy this, Reform has been working in collaboration with NHSX to produce several easily digestible sources of information which can be used by innovators, medical practitioners, statutory bodies, regulators and any other interested party to understand the full regulatory pipeline for data-driven technologies in healthcare.

Interim reports published on Online Targeting and Bias in Algorithmic Decision-Making

The National Cancer Registration and Analysis Service - Case studies & blog - Cancer registration data

The National Cancer Registration and Analysis Service (NCRAS) has published an informative blog and case studies, highlighting how patient data is used to save lives & improve treatments. The emphasis is on the patient as the source of the data.

NCRAS has been "working with patients, healthcare professionals, and the public to develop these case study type stories which describe how exactly NCRAS, and others, use patient information to improve cancer care."

Association of Medical Research Charities - Report - Making a difference: Impact Report 2019 - UK focus

A report from the Association of Medical Research Charities (AMRC) following on from its initial Impact Report in 2017 and "incorporating two more years of data and new stories of how charity-funded research has impacted patients and society."

The report is structured around the five areas of impact:

• Generating new knowledge
• Translating research ideas into products and services
• Creating evidence that will influence policy or other stakeholders
• Stimulating further research via new funding or partnerships
• Developing the human capacity to do research

IPPOSI - Event - Electronic Health Records in Ireland: getting it right from the start - Monday, 7 October, Dublin - Ireland focus

Health Research Authority - Guidelines - New best practice guidance for public involvement

National Data Guardian - Consultation response - Response to the comments and feedback on the NDG proposed work priorities

The National Data Guardian for Health and Care (NDG) has published the response to the consultation on proposed work priorities.

In response to the consultation feedback the NDG has refined plans and will be pursuing three refocussed priorities. These are:

• Supporting public understanding and knowledge
• Encouraging information sharing for individual care
• Safeguarding a confidential health and care system

Addressing the plan to encourage information sharing for individual care, the response states:

• We will continue to support the work to develop a framework to realise the benefits for patients and the NHS where health and care data is being used to underpin innovation. This will come under our priority: Supporting public understanding and knowledge
• We will address respondents calls for the NDG to support the use of data in innovation which can improve care. This will now come under the priority Supporting public understanding and knowledge.
• We will examine what additional public engagement would be most useful on the subject of the benefits from the use of health and care data. This will now be addressed as a new area of work under the priority: Supporting public understanding and knowledge.
• We will amend our priority for Safeguarding a confidential health and care system to reference work looking at the linking of health and care data with other types of information.

National Data Guardian poll findings: public attitudes to organisations innovating with NHS data

The Swallows Head and Neck Cancer Charity are conducting a National survey on Carers of Cancer patients. The survey is for ALL types of cancers and its aim is to understand what support is given, what support is needed, how support can be reached and what impact being a cancer patient carer can have on carers as they go through diagnosis, treatment and beyond with their patients.