A movement of patients, carers and relatives
Harnessing the patient voice to build confidence in the use of patient data to save lives and improve outcomes
The Academy of Medical Sciences has published a report on its engagement work around using AI in healthcare - AI in healthcare: learning from success stories. use MY data Members Debbie Keatley,
Sarah Markham and John Marsh took part in the work, participating in “discussions around next steps to accelerate adoption of AI into health care”.
“Artificial intelligence-based healthcare technologies have great potential to transform health outcomes and the UK’s healthcare system. However, there are currently barriers to their adoption and scale-up. It’s time to learn from the technologies that have overcome these challenges and harness the full potential of AI in healthcare. Our FORUM workshop in March, held in partnership with the Royal Academy of Engineering, looked at accelerating safe and effective adoption of artificial intelligence in the healthcare system. We brought together representatives from academia, industry and the health and social care sectors, along with patients and regulators. They discussed what lessons can be learnt from the AI technologies already in use in healthcare…”
The report, along with an executive summary with next steps, was published on 28 July here.
A team at Imperial College London has published the useful summary guide - Navigating Digital health: A guide to data and artificial intelligence in healthcare focussing on how “Artificial intelligence is starting to help organise and deliver healthcare”. The guide aims to “help everyone understand more about data and artificial intelligence. We want each and every person to have the confidence to make choices that are right for them about their data and its use in healthcare”.
“In the Department of Surgery and Cancer, we involve patients and the public in all stages of our research. We noticed that more and more researchers were bringing research projects involving data science and artificial intelligence to the patient and public involvement group, yet the group felt they did not have adequate knowledge of this field to contribute to the research in meaningful ways. So, we decided to design a guide to data and AI for the public, by the public. This would be a free educational resource for everyone, to encourage informed patient and public involvement in research projects and the development of apps and devices that patients would want to use to support their health.”
The guide was published on 04 July and is available here.
One of our Educational Sessions is on this same theme – Artificial Intelligence and Machine Learning – an introduction - and is available in our Members Learning area.
The National Institute for Health and Care Research (NIHR) Cambridge Biomedical Research Centre (BRC)
is hosting Help shape health data research in Cambridge on Tuesday, 29 August, 18:30 to 20:00, online.
“Medical records contain a wealth of health data including tests, diagnoses, treatments, and outcomes. These data can be used in cutting edge health data research including modelling more efficient planning of services, identifying new treatments that work for specific patient groups or training AI models to help clinicians diagnosis illness faster.
These innovations can ultimately help to improve services and transform the care that patients receive. It is vital that researchers work with patients and the public to ensure that health data are used in ways that protect privacy and that patients are comfortable with.
CUH [Cambridge University Hospitals] have established the Electronic Patient Record Research and innovation (ERIN) database and will be setting up a patient panel to review applications from researchers for data; information on how you can get involved in and start shaping health data research will be provided at the event…”
The event is free to attend and open to all. Details and registration are available here.
In a new blog Patient Public Involvement in Research Using Administrative Data, Elizabeth Lemmon outlines the benefits of using administrative data (which includes NHS data), of involving the public and patients within this and of her own experiences as a researcher and patient. Elizabeth leads Early Career Researchers Using Scotland Administrative Data (eCRUSADers) and is a use MY data Associate Member.
“This post is Part One of a two part post on Public and Patient Involvement (PPI) in research using administrative data. In this part, we discuss PPI, think about why it is important and I will convince you why it will benefit your research. Before we get started, I just wanted to give you an overview of my journey through PPI and set the scene that motivated this post…For me, PPI is a continuous conversation with those whose data we are using, to understand specific disease or service areas, ultimately with a view to improving their lives in a meaningful way.”
Health and Care Research Wales has published its new Framework to embed and integrate research in the NHS.
The Framework is a “drive to embed and integrate research into all aspects of health and care services in NHS Wales…Improving health and care services in Wales using evidence-based approaches is fundamental to improving the quality of care and putting the public at the heart of everything. It is widely known that research makes a real difference to improving health outcomes and to the lives of patients and people in our communities…This Framework will be a key driver to keep research high on the agenda within the NHS and reinforce the role it plays in day-to-day care”.
Results from the 2022 National Cancer Patient Experience Survey (CPES), have recently been published, using data collected to measure patient experience and thereby improve future patient experiences.
“This feedback is used to understand where care is working well and how NHS cancer services across England can be improved. Results from the survey are used by providers to improve the experience of cancer patients at a national, regional, and local level.”
Historically the survey has always had a high response rate from patients and the 2022 survey received over 61,000 responses (a response rate of 53%). This year a free online dashboard has been published, allowing the results to be shown nationally, by Cancer Alliance, Integrated Care Board or NHS Trust.
As part of his Always On series Rory Cellan-Jones, independent journalist, has published My Parkinsons data - at last! The data is a result of using personal monitoring equipment supplied by a technology company.
"For more than four years now I have been on a quest…it is data I have been seeking - hard numbers about my Parkinsons. How severe are my symptoms, do they vary throughout the day, do they respond to the medication I take?"
UCL (University College London) Great Ormond Street Institute of Child Health is hosting Comics for research, an in-person workshop for young people on Saturday, 26 August from 14:00 to 17:00, London
This workshop is aimed at young persons age 11 to 17 years who are interested in writing or illustrating a comic strip. In this workshop we will discuss the results of one research project and summarise them in a comic strip…You do not have to have any skills in writing or drawing, just your imagination and we can work together to make a great comic that helps others understand the research project better.
The workshop is free to attend. Full details and registration are available here.
Cancer Research UK has announced details of its new Trusted research programme and of how the programme can help external researchers access patient data in a timely manner.
"Through our research data strategy, we’re aiming to unleash the potential of data-driven research to improve our understanding of cancer and create better outcomes for patients. Our new trusted research programme supports this by helping to maximise the safe and effective collection and reuse of cancer related data. We’re offering support for researchers dealing with sensitive health and related data, including anyone harnessing the latest approaches in machine learning and artificial intelligence, 'omics' and population scale data processing…"
The announcement was made on 10 July with details here.
Breaking Barriers, Building Community: Exploring DARE UK Community Groups on Thursday, 20 July, 12:00 to 13:00.
Dare UK will host the webinar Breaking Barriers, Building Community: Exploring DARE UK Community Groups on Thursday, 20 July, 12:00 to 13:00.
“Join like-minded people and the DARE UK team to discover how we’re building communities to support UK-wide sensitive data research. In this webinar led by the DARE UK programme team, we will cover a range of topics to provide you with a clearer understanding of the DARE UK Community Groups initiative…” This event is free and open to everyone to attend.”
The webinar is free to attend. Full details and registration are available here
The Department of Health & Social Care (DHSC) has published the government 2023 mandate to NHS England.
The Secretary of State has laid out a very limited number of priorities:
- Priority 1: cut NHS waiting lists and recover performance
- Priority 2: support the workforce through training, retention and modernising the way staff work
- Priority 3: deliver recovery through the use of data and technology.
It is the third priority which is of course of particular interest to use MY data - "Optimising the use of health and social care data to deliver better services and outcomes for patients, maintaining the highest standards of data protection and ensuring cyber resilience to maintain and build public trust in our protection of people’s data".
The focus on data is positive, but whilst the "the highest standards of data protection and ensuring cyber resilience" are important to build trust, the document does not highlight the need to develop a wider public understanding of how we see benefits from health data, as its focus is on reducing risk through protection. A strong public conversation about the benefits of using data, is needed, rather than a solitary focus on risk. This will be an area for our new Comms & Media Lead to work on with our Members.
The mandate was published on 15 June and is available here.
In news that will have a major impact on staff, patients and research, the National Cancer Research Institute (NCRI) has announced that it will be closing and ceasing all operations on 14 July, then winding down over the three to six months beyond that.
The announcement was made on 26 June and is available here.
The General Practice Data Trust pilot "aims to explore how to give back control of their data to people who have opted out of NHS Digital’s General Practice Data for Planning and Research (GPDPR) programme and provide an opportunity to participate in life saving research".
The pilot has now created a video as an introduction and with details of the technical side of how the Trust "could ensure health data is shared in line with patients' wishes".
The video was published on 28 June and is available here.
How the sequence of disease acquisition affects life expectancy
The SAIL Databank (Secure Anonymised Information Linkage) has led on groundbreaking research that examines how the sequence of disease acquisition affects life expectancy. The research was made possible through using the routinely collected patient data that is stored in the Databank.
"…these models could be used to help inform patients, clinicians, and healthcare decision-makers on the appropriate identification and management of patient care, leading to improved patient outcomes and healthcare cost reductions…"
The research was published on 30 June and is available here.
The SAIL Databank (Secure Anonymised Information Linkage) is hosting a SAIL Databank User Forum on Thursday, 20 July from 10:00 to 12:00.
“This event is open to all users of the SAIL Databank platform as well as members of the public. The User Forum is a great opportunity to hear from guest speakers about the research they're undertaking and to get all the latest information about SAIL's developments across IT infrastructure, analytical software, data resources, public engagement, marketing and other developments here at SAIL.”
The event is free to attend. Details and registration are here.
The Office for National Statistics (ONS) has published a Health Index for England covering 2015 to 2021 looking at three domains of health: Healthy People, Healthy Lives and Healthy Places. A new interactive online tool accompanies the publication.
The accompanying interactive online tool contains all of the Index data and shows how health changed in each local authority area across England between 2015 and 2021. The tool is available here.