Meredith Leston’s Post

We are at a pivotal moment where the convergence of large health and biomedical data sets, artificial intelligence and advances in biotechnology is set to revolutionise health care, drive economic growth and improve the lives of citizens. And the UK has strengths in all three areas. The immense potential of the UK's health-data assets, from the NHS to biobanks and genomics initiatives, can unlock new diagnostics and treatments, deliver better and more personalised care, prevent disease and ultimately help people live longer, healthier lives. However, realising this potential is not without its challenges. The complex and fragmented nature of the current health-data landscape, coupled with legitimate concerns around privacy and public trust, has made for slow progress. The UK has had a tendency to provide short-term funding across multiple initiatives, which has led to an array of individual projects – many of which have struggled to achieve long-term sustainability and deliver tangible benefits to patients. To overcome these challenges, it will be necessary to be bold and imaginative. We must look for ways to leverage the unique strengths of the NHS, such as its nationwide reach and cradle-to-grave data coverage, to create a health-data ecosystem that is much more than the sum of its many parts. This will require us to think differently about how we collect, manage and utilise health data, and to create new partnerships and models of collaboration that break down traditional silos and barriers. It will mean treating data as a key health resource and managing it accordingly. One model to do this is the proposed sovereign National Data Trust (NDT) – an endeavour to streamline access to and curation of the UK's valuable health-data assets. It would ensure a return on investment through access fees, quicker and more affordable access to innovative treatments, and value-added services such as data discovery, clinical trials and the analysis and facilitation of research. This would all be while maintaining public ownership and protection of the data, and never selling or transferring them to private interests. The NDT represents a fundamental shift in the approach to the governance and utilisation of health data, acknowledging its potential to improve lives and being clear about the necessity for a robust, transparent and sustainable framework to realise its benefits. #nhs #powerofdata #health #data #innovation #technology #ai #healthoutcomes #patientbenefit #genomics #clinicaltrial #earlydiagosis #personalisedcare #personalisedmedicine Tony Blair Institute for Global Change

Small pots of funding and ever changing initiatives are holding us back in making the most of the health data we have in the UK. This is harming patients and the economy. We can continue with this hand-to-mouth approach - or we can break this cycle by setting up a sovereign National Data Trust to become the custodian for access to health data on behalf of the public. Benedict Macon-Cooney, Darcy Ward, Henry Li, Luke Stanley, and I set out an operating model for a data trust in in the latest Tony Blair Institute for Global Change report. Incremental will not do, we need some bold steps towards unified access to health data, working closely with the public. Or, in the words of Sir Patrick Vallance in his foreword to the report, "realising the full potential of health data will mean taking calculated risks, exploring new avenues and learning from both successes and failures." A huge thank you for the incredible engagement we have had during the development of the report from across the public and private sector. https://lnkd.in/eh2guvkT

This is a challenge for health systems worldwide (not just in our federated datasets in Canada). Well worth exploring the need for transformational change and bold ideas to access the value in health data for the benefit of patients and the public. Interesting take from the UK below...

This is an interesting policy idea and I personally believe we must share data to save lives. Faced with a choice between data privacy and health what would you choose? Central public ownership is one model but what about alternatives like Financial Services which has privately owned but heavily regulated credit bureaus? It also has open banking these days….. What’s your view on which would deliver the most value and be acceptable to the public?

So good to see this. #dataforgood. We have toiled hard for almost 5 years because we know data can solve many societal issues, especially when the right sources can be linked. We have engineered our platform to protect the consumer from being reidentified, while making data linkable and contained analytics possible so that we can solve financial inclusion, reduce fraud and even hopefully cure cancer. Over regulating is often as harmful as under regulating.

In a world where healthcare advancements increasingly rely on the sharing of health data, our comprehensive systematic review titled "Health Data Sharing Attitudes Towards Primary and Secondary Use of Data"; just published in eClinicalMedicine of The Lancet, sheds light on associated barriers or motivators and significant influencing factors. It is based on 2109 screened studies - 116 of which included in the qualitative synthesis (228,501 participants) - and explores a wide range of health data types, including patient-generated health data (PGHD), personal health information or data (PHID), genomic data, and more. Most individuals are willing to share their health data for primary purposes, particularly to enhance healthcare delivery for receiving optimal medical care. However, when it comes to secondary uses like medical research, attitudes towards sharing data become more nuanced: factors such as the type of data being shared, and who it's being shared with, significantly influence individuals' willingness to participate. Sociodemographic factors such as age, education level, and familiarity with genetics play significant roles in shaping individuals' attitudes towards health data sharing. Concerns about privacy and security remain paramount among data donors. While participants in the studies included in our review acknowledge the potential benefits of data sharing, there's a notable gap in understanding when it comes to ethical considerations. By addressing barriers, concerns, and promoting awareness about data sharing practices, we can cultivate a more active and responsible data-sharing culture and society. Read more about our findings at the following link. https://bit.ly/3PuJVlx Dr Stefan Buttigieg MD MSPH MSc Danny Van Roijen Yonah Welker Jan de Lange Henrique Martins Markus Kalliola Helga M. Brogger, MD Bernd Rechel Kathleen Gray Isabelle Zablit-Schmitz Louise Parmenter Vanessa Mendes Tapani Piha Michel Silvestri Gregory Hummer MD Eamon Coyne Elinor Wahal Alistair Grenfell Petra Wilson Lisa Thomlinson Salvatore Scalzo Konstantin Hyppönen Roger Lim Athanasios Filippou Mina Boubaki Cátia Sousa Pinto, MD

Today, I had the privilege of moderating a fascinating session at the conference focused on the innovative use of health data for preventive measures. The session, titled 𝗣𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗥𝗲𝗶𝗺𝗮𝗴𝗶𝗻𝗲𝗱: 𝗚𝗲𝘁𝘁𝗶𝗻𝗴 𝘁𝗵𝗲 𝗠𝗼𝘀𝘁 𝗼𝘂𝘁 𝗼𝗳 𝗛𝗲𝗮𝗹𝘁𝗵 𝗗𝗮𝘁𝗮 𝗳𝗼𝗿 𝗣𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻, provided valuable insights into the utilization and analysis of health data. Here are some highlights from the session: 𝗦𝗽𝗲𝗮𝗸𝗲𝗿𝘀 1. Mahmood Adil, MD, Global Clinical Data & Digital Lead, Royal College of Physicians of Edinburgh, UK; Honorary Professor of Health Intelligence & Service Effectiveness, University of Glasgow, UK. 2. Francesco Giuliani, Head of Innovation and Research, Fondazione Casa Sollievo della Sofferenza Research Hospital, Italy. Prof. Mahmood Adil shared his experience as Clinical Director of NHS Scotland, where he 𝗲𝘀𝘁𝗮𝗯𝗹𝗶𝘀𝗵𝗲𝗱 𝗱𝗮𝘁𝗮 𝗵𝘂𝗯𝘀 𝗮𝗰𝗿𝗼𝘀𝘀 𝗦𝗰𝗼𝘁𝗹𝗮𝗻𝗱, 𝗲𝗮𝗰𝗵 𝘀𝗲𝗿𝘃𝗶𝗻𝗴 𝘂𝗽 𝘁𝗼 𝟳𝟱𝟬 𝗽𝗲𝗼𝗽𝗹𝗲. These hubs compared various datasets, including health data, and applied predictive models to gain insights. He also discussed the use of the 𝗔𝘁𝗹𝗮𝘀 𝗼𝗳 𝗩𝗮𝗿𝗶𝗮𝘁𝗶𝗼𝗻 𝘁𝗼 𝗶𝗱𝗲𝗻𝘁𝗶𝗳𝘆 𝗮𝗻𝗱 𝗮𝗱𝗱𝗿𝗲𝘀𝘀 𝗱𝗶𝘀𝗽𝗮𝗿𝗶𝘁𝗶𝗲𝘀 𝗶𝗻 𝗵𝗲𝗮𝗹𝘁𝗵 𝗼𝘂𝘁𝗰𝗼𝗺𝗲𝘀. Francesco Giuliani discussed integrating 𝐰𝐞𝐚𝐫𝐚𝐛𝐥𝐞 𝐝𝐚𝐭𝐚 𝐰𝐢𝐭𝐡 𝐩𝐚𝐭𝐢𝐞𝐧𝐭𝐬' 𝐬𝐨𝐜𝐢𝐨𝐞𝐜𝐨𝐧𝐨𝐦𝐢𝐜 𝐝𝐚𝐭𝐚 𝐭𝐨 𝐜𝐫𝐞𝐚𝐭𝐞 𝐦𝐨𝐝𝐞𝐥𝐬 𝐮𝐬𝐢𝐧𝐠 𝐥𝐚𝐫𝐠𝐞 𝐥𝐚𝐧𝐠𝐮𝐚𝐠𝐞 𝐦𝐨𝐝𝐞𝐥𝐬 (𝐋𝐋𝐌𝐬). These models can identify patient risks and improve patient engagement, leading to the development of entirely new clinical pathways. The session highlighted how preventive health interventions can be more targeted and efficient through the analysis and aggregation of diverse data sources. It also addressed challenges related to data collection, privacy, and consent. One of the crucial points raised was the 𝗼𝗻𝗴𝗼𝗶𝗻𝗴 𝗶𝘀𝘀𝘂𝗲 𝗼𝗳 𝗵𝗲𝗮𝗹𝘁𝗵 𝗲𝗾𝘂𝗶𝘁𝘆. 𝗗𝗲𝘀𝗽𝗶𝘁𝗲 𝗮𝗱𝘃𝗮𝗻𝗰𝗲𝗺𝗲𝗻𝘁𝘀, 𝘀𝗶𝗴𝗻𝗶𝗳𝗶𝗰𝗮𝗻𝘁 𝗱𝗶𝘀𝗽𝗮𝗿𝗶𝘁𝗶𝗲𝘀 𝘀𝘁𝗶𝗹𝗹 𝗲𝘅𝗶𝘀𝘁 𝗮𝗰𝗿𝗼𝘀𝘀 𝗘𝘂𝗿𝗼𝗽𝗲, 𝘄𝗵𝗲𝗿𝗲 𝗶𝗻𝗱𝗶𝘃𝗶𝗱𝘂𝗮𝗹𝘀 (from the same country) 𝗶𝗻 𝗵𝗲𝗮𝗹𝘁𝗵𝗶𝗲𝗿 𝗿𝗲𝗴𝗶𝗼𝗻𝘀 𝗰𝗮𝗻 𝗹𝗶𝘃𝗲 𝘂𝗽 𝘁𝗼 𝟮𝟬 𝘆𝗲𝗮𝗿𝘀 𝗹𝗼𝗻𝗴𝗲𝗿 𝘁𝗵𝗮𝗻 𝘁𝗵𝗼𝘀𝗲 𝗶𝗻 𝗹𝗲𝘀𝘀 𝗵𝗲𝗮𝗹𝘁𝗵𝘆 𝗮𝗿𝗲𝗮𝘀. Addressing these inequities remains a critical challenge for the healthcare community. A big thank you to the speakers for their inspiring contributions and to all participants for the enriching discussions. #Healthcare #DataAnalysis #Prevention #PublicHealth #Innovation #HealthData #HealthEquity

A systematic review on Health data sharing attitudes towards primary and secondary use of data #FAIRdata #HealthData #medicine

Great study highlighting important issues to tackle!

Over the past few months, the digital health landscape has been buzzing with innovation and progress, both on a national and local level. Here's a snapshot of the latest advancements shaping the future of health care: 🔸 Australia’s National Digital Health Strategy and Roadmap: The Australian Digital Health Agency recently released a 5-year plan that sets the vision and pathway for Australia's digital health future. The Roadmap sets out clear and measurable steps for how the strategy will be implemented. 🔸 Digital Health Blueprint and Action Plan 2023–2033: Outlines the Australian Government Department of Health and Aged Care’s 10-year vision for digital health to drive a more person-centered, connected and sustainable health system. The accompanying action plan details the initiatives to bring this vision to life. 🔸 HTQ partner, CSIRO's Australian e-Health Research Centre (AEHRC), released the AI Trends for Healthcare report, which identifies the opportunities and challenges facing the continued and inevitable integration of AI in Australia’s health care sector. Locally, Health Translation Queensland has also been leading initiatives to help inform and build more connected and streamlined digital health systems in Queensland: 🔸 Queensland node of the Health Studies Australian National Data Asset (HeSANDA): We are actively supporting health research data sharing and reuse through building and administering the Queensland node – our statewide online catalogue of health research data – in collaboration with AEHRC and the Queensland Cyber Infrastructure Foundation (QCIF) 🔸 Health Research Digital Ecosystem Project: Working with our partners, Queensland Health, AEHRC and The University of Queensland’s Queensland Digital Health Centre, we mapped and described the digital ecosystem that underpins health research in Queensland. By understanding the landscape better, we can identify opportunities for collaboration, data sharing, innovation and improvement. 🔸 Autumn Seminar Series - Data: Working with Griffith University, AEHRC and Townsville Hospital and Health Service, we are delivering a seminar series on health research data governance, covering important data topics like governance, management planning and analytics, and Indigenous data sovereignty. #DigitalHealth #HealthcareInnovation Queensland node of HeSANDA: https://lnkd.in/gcfyHfxP Health Research Digital Ecosystem Project: https://lnkd.in/g-M4wdbx Autumn Seminar Series: https://lnkd.in/gQ3uhrJx