Patient participation - a role for citizen generated data?

Sarah Cook

1 June 2018

Patient participation - a role for citizen generated data?

There has been a growing emphasis on involving patients and the public to help improve different aspects of healthcare – including patient safety and patient experience as well as health outcomes.

Patient Participation Groups (PPGs) work with the NHS to share their experiences and evaluations of NHS services. The insights that PPGs provide are helping to transform local and system wide changes to improve patient experience and management.

Providing feedback on services is just one of the ways in which patients are playing a participatory role in healthcare. Patient involvement in their own care is another and one towards which NHS England have made a commitment to become better at, since greater involvement can help improve outcomes and experience for patients.

Patient participation – could citizen generated data play a role?

A significant majority of the population own a smart phone, and many are accessing consumer-facing self-testing and self-tracking technologies. These technologies are enabling patients and healthy citizens to collect information about their health. This could in principle present the opportunity for individuals to share that data with healthcare professionals or use it to better understand their own health. These technologies could also help monitor a variety of physiological and psychological parameters at home and on the move, rather that solely in a medical setting.

Time is an often overlooked variable when measuring levels of any number of biomarkers or other indicators linked to health. Conventionally, most health tests and measurements (e.g. blood pressure, vitamin and mineral levels) are carried out at a single point in time. With the rise of self-testing and more sophisticated lifestyle tracking devices and apps, more regular or even continuous monitoring could be achieved without the assistance of healthcare practitioners.

This ability to continuously monitor various parameters related to health outside of the healthcare system could impact on individuals, the healthcare system, and how health research is conducted.

Could quantifying health be helpful?

The use of self-tracking tools for research to better understand disease trajectory and the efficacy and side effects of treatments are becoming increasingly popular. Volunteers are not only being sourced through digital media but are also being involved in trials through their smartphone or tracking device. Platforms like Apple’s ResearchKit host a variety of apps designed by researchers to gain an understanding of particular populations by collecting users’ data.  Wearable devices are being created specifically with the intention of collecting data about target populations to understand the characteristics of disease and what factors influence recovery or exacerbate symptoms. For example, the smartwatch produced by the Michael J. Fox Foundation and Verily was launched recently to collect data on users with Parkinson’s disease for insights into how tremors associated with the disease may change over time and in different situations.

Remote patient monitoring is gaining momentum within the NHS with test beds currently underway for tracking patients with long term conditions outside the healthcare environment. The aim of these test beds is to keep patients well, independent and avoiding crisis points. This can give patients a sense of empowerment and feeling of control over their condition as they are the ones monitoring and managing their disease. However, beyond patients with existing conditions, there are also apparently healthy individuals who may not be embedded within the healthcare system, but who are also producing data about their health. Currently there tends to be  less focus on how data from these citizens could be harnessed to better understand health - and ill health.

In theory, having more data about individuals, particularly before the onset of illness, could revolutionise the diagnosis and management of disease. Collecting data on a continuous basis allows for a more holistic depiction of what is normal or healthy for an individual rather than extrapolating from a data point captured at a single point time, whether their measurement is in the ‘average’ range for a population. Using individuals’ baselines to calculate deviations from the norm could enable more personalised care approaches to support individuals in managing their health and delaying the onset of ill health.

The data integration challenge

Over the years several policy documents have made reference to building capabilities for citizens to be able to ‘write’ into their personal health records, including data from sources, like apps and wearables. Currently, only a handful of NHS Trusts have publically announced plans to integrate data generated by patients outside of the care system, and only for a few measurements such as sleep and activity. One of the major challenges for integrating this data is the lack of interoperability of many devices, wearables and apps.

Besides addressing the major data integration challenge, a fundamental question remains around if and how this citizen generated data can be used alongside patient records. Knowing what types of data to collect, for what purpose, in what format and to what standards will be vital to ensure that any data collection efforts are effective and valuable for the health services and for patients alike.

Our project on citizen generated data will be exploring some of the areas discussed here in the following months.