The Future of Patient Generated Data for UK Health Research

Our Chief Technology Officer, Justin Bingham joined a roundtable for the Centre for Epidemiology Versus Arthritis to discuss the future of patient-generated data with colleagues from Google Health, Stanford University, NHSX & many more.

The uptake of smartphones and wearables has promised major opportunities for clinical care and health research for more than a decade. Global wearable usage has increased over 15x since 2014, with 444million wearable devices shipped in 2020, and smartphones are now near ubiquitous, with 6.64 billion users across the planet.

This extraordinary growth means patients worldwide have the ability to contribute digital data from their own devices (also known as digital patient-generated health data, hereafter PGHD) for both their own personal health, and population health assessment.

The potential ramifications for public health are huge; from studying the daily rhythms of disease and wellbeing, to collating a wider range of information around health and behaviour and providing those insights back to individual patients through the same devices.

PGHD provides both individuals, and healthcare systems with the keys to unlock some longstanding healthcare challenges:

• What lifestyle changes, such as diet or exercise, will lead to improvements in the symptoms of my condition?
• Could monitoring of disease via my device guide care or treatment at the right time?
• How, if at all, can I expect my symptoms to change day by day?

Despite this, the longstanding promise of health research from consumer devices
has not yet translated into widespread delivery, and there are a number of questions around how best to utilise PGHD. In order to successfully integrate PHHD into the healthcare ecosystem. There are many barriers, from design, through setup and usage, and the majority of these barriers need to be overcome at the same time.

Through the round table, four key themes were identified, with three key recommendations for each:

1. Strengthening patient and public partnership throughout the study lifecycle
2. Advancing research methods for PGHD studies
3. Progressing technology to support digital PGHD studies
4. Developing trustworthy studies and systems

Strengthening patient and public partnership throughout the study lifecycle

• In order to maximize the buy-in and long term engagement, both individual patients and the wider public have to be involved in designing every stage of the study.
• But buy-in alone is not enough. Often studies do not have adequate resourcing to maintain public engagement, and in order for them to succeed, this must be ammended.
• Patient participation is not a problem unique to PGHD, and decades of research into best practice for patient and public involvement and engagement (PPIE) should be built upon to develop the core principles for maximizing the effectiveness of PPIE in PGHD research.

Advancing research methods for PGHD studies

• In order for the aforementioned best practice to be built upon, and for population health research to make a real step change, it’s important that it is properly invested in; including analysis methods and study design.
• Those working within the PGHD field must work collaboratively to establish and share best practice, in the design, conduct and reporting of studies.
• It is also critical that PGHD collection tools are freely shared between parties, to ensure future implementation across all devices and platforms.

Progressing technology to support PGHD studies

• Platforms must strive to be both easy accessible and usable by researchers, working across operating systems and platforms.
• Alignment with FAIR principles for data collection to ensure that data is reusable across studies and disease areas if appropriate
• Develop methods that provide confidence in derived metrics from sensor data.
• Developing trustworthy studies and systems
  Allowing patients to not only access their PGHD, but also to control it and view its flow through self administered portals is key to ensuring that patient trust is maintained.
  Develop methods for ensuring that all data processing, particularly of sensitive data, is secure on both the user’s device and associated federated data analysis systems.
• For research requiring linked data, PGHD should integrate into existing national infrastructure for secure data management. In the UK, this should include the ability to link to NHS datasets.

Summary
PGHD is not a new phenomenon, but has so far failed to deliver the at-scale result it could. In order to enact a step-change in not only its use, but also its delivery and the public’s trust in it.

The key to increasing the sector’s momentum is to ensure collaboration, not just with patients, but across the entire system. Ensuring that healthcare organisations, private enterprise and regulatory bodies are all working to the same set of standards, should see the sectors hitherto hindered growth issues dissipate.

By taking learnings from other industries, academia, and recognising the importance of public trust, PGHD has the potential to improve the lives of both current and future generations.