Health Research from Home: advancing population research using smartphones and wearables
Lead Research Organisation:
University of Manchester
Department Name: School of Biological Sciences
Abstract
Many patients and the public are willing, and often keen, to contribute to health research. This is especially true if the research addresses questions of personal importance, and which lead to clear public benefit. Unfortunately, taking part in research is not always easy with practical challenges like travelling for clinic visits during a working week.
Smartphones and wearables provide a new opportunity for patients and the public to contribute to health research from the comfort of their home. For patients, this can make participation easier and allows more people to take part. For researchers, it provides an exciting new data source, allowing important questions to be addressed that have previously been unanswerable. Opportunities include measuring things more frequently: for example logging daily symptoms during the pandemic via the Zoe COVID Symptom Study smartphone app allowed us to understand that loss of smell was an important and specific symptom of COVID-19 infection. Consumer technology also allows researchers to measure things more accurately. This might include using sensors within your smartphone or wrist-worn device to measure how your activity is changing in response to your disease, or following a new treatment. This new type of data that comes direct from the public can be even more useful if combined with other data, such as information provided by clinical teams within health records, or genetic blood samples that have been donated for research.
The number of successful health research studies using smartphones and wearables, however, remains low. This is because it is new and difficult. It requires research teams to overcome lots of barriers simultaneously. For example, they need to design the study so patients will be interested, can take part simply and easily and remain engaged through time. They need to find the right technology partner to help them understand what can be measured with the device, and how to do that in the best possible way. They need to ensure all the data remains secure as it moves from the device to computer storage ready for analysis. They need to understand how best to analyse and interpret this new continuous stream of data.
Our Partnership Grant is bringing together researchers who have all conducted successful studies using smartphones and wearables. It is our intention to pool our experience and share it with the wider research community. We will do this by running a series of events. These will describe studies that have gone well, as well as those that haven't, to share lessons learned. We will host regular online meetings and annual events that will allow the whole community to meet and learn from one another. We will host 'walk-in' clinics providing advice and support about partnership with patients and the public, and how best to conduct research safely and securely. We will support researchers to develop strong bids for future research, and will run annual challenges to improve the way in which we can analyse those continuous data streams. We will share all of this learning at the events, and will also store it online (eg as documents or short videos) for anyone to access any time.
We will also run two projects at the cutting edge of Health Research from Home which require data from smartphones and wearables to be linked to other health data: one on understanding patterns of physical activity after knee replacements, and the second on long-term health outcomes of Long COVID. The projects will answer clinically important questions and simultaneously enhance our understanding of how best to conduct such studies.
Taken together, we aim to establish new partnerships, build capacity in this important area and advance into new, technically difficult areas. We will develop a skilled and sustainable community who will, in the future, be enable the public to help answer many of those questions that matter to them through the use of their own devices.
Smartphones and wearables provide a new opportunity for patients and the public to contribute to health research from the comfort of their home. For patients, this can make participation easier and allows more people to take part. For researchers, it provides an exciting new data source, allowing important questions to be addressed that have previously been unanswerable. Opportunities include measuring things more frequently: for example logging daily symptoms during the pandemic via the Zoe COVID Symptom Study smartphone app allowed us to understand that loss of smell was an important and specific symptom of COVID-19 infection. Consumer technology also allows researchers to measure things more accurately. This might include using sensors within your smartphone or wrist-worn device to measure how your activity is changing in response to your disease, or following a new treatment. This new type of data that comes direct from the public can be even more useful if combined with other data, such as information provided by clinical teams within health records, or genetic blood samples that have been donated for research.
The number of successful health research studies using smartphones and wearables, however, remains low. This is because it is new and difficult. It requires research teams to overcome lots of barriers simultaneously. For example, they need to design the study so patients will be interested, can take part simply and easily and remain engaged through time. They need to find the right technology partner to help them understand what can be measured with the device, and how to do that in the best possible way. They need to ensure all the data remains secure as it moves from the device to computer storage ready for analysis. They need to understand how best to analyse and interpret this new continuous stream of data.
Our Partnership Grant is bringing together researchers who have all conducted successful studies using smartphones and wearables. It is our intention to pool our experience and share it with the wider research community. We will do this by running a series of events. These will describe studies that have gone well, as well as those that haven't, to share lessons learned. We will host regular online meetings and annual events that will allow the whole community to meet and learn from one another. We will host 'walk-in' clinics providing advice and support about partnership with patients and the public, and how best to conduct research safely and securely. We will support researchers to develop strong bids for future research, and will run annual challenges to improve the way in which we can analyse those continuous data streams. We will share all of this learning at the events, and will also store it online (eg as documents or short videos) for anyone to access any time.
We will also run two projects at the cutting edge of Health Research from Home which require data from smartphones and wearables to be linked to other health data: one on understanding patterns of physical activity after knee replacements, and the second on long-term health outcomes of Long COVID. The projects will answer clinically important questions and simultaneously enhance our understanding of how best to conduct such studies.
Taken together, we aim to establish new partnerships, build capacity in this important area and advance into new, technically difficult areas. We will develop a skilled and sustainable community who will, in the future, be enable the public to help answer many of those questions that matter to them through the use of their own devices.
Technical Summary
The aims of Health Research from Home are to collate and spread best practice in smartphone and wearable population research to the wider community, and to pioneer the successful linkage of smartphone and wearable data to existing research databanks. This will lead to a more skilled and expanded research community with foundational patient and public partnership, robust information governance, better connections to technology partners, and improved analysis methods. This is an area of major opportunity, and where the UK has the potential to lead globally given its existing skills and health data research assets. Ultimately, the Partnership is devised to support future well-designed, hypothesis-led research that matters to patients and the public, enabled via mass public participation using smartphones and wearables from the comfort of their home.
Main activities will be a series of community and capacity building events, supported by a new online Community Hub, plus two driver research projects and evaluation of other UK studies linking smartphone and wearable data to existing national research databanks. Outputs will include a series of webinars; annual meetings; information governance, technology and PPIE clinics; grant-writing retreats and time-series challenge events; all supported by a sustainable online resource of people, know-how and methods, data, code and technology. Outputs of the driver projects, with wider evaluation of other linkage studies, will be a report and recommendations based on lessons learned from varied approaches to conduct and linkage (as well as answers to the clinical questions about physical activity patterns after knee replacement and long-term health outcomes following Long COVID). The Partnership involves academics and public contributors from Manchester, London (Kings and Imperial), Edinburgh, Oxford and Cambridge, in collaboration with Health Data Research UK, Google, Verily Life Sciences and GSK.
Main activities will be a series of community and capacity building events, supported by a new online Community Hub, plus two driver research projects and evaluation of other UK studies linking smartphone and wearable data to existing national research databanks. Outputs will include a series of webinars; annual meetings; information governance, technology and PPIE clinics; grant-writing retreats and time-series challenge events; all supported by a sustainable online resource of people, know-how and methods, data, code and technology. Outputs of the driver projects, with wider evaluation of other linkage studies, will be a report and recommendations based on lessons learned from varied approaches to conduct and linkage (as well as answers to the clinical questions about physical activity patterns after knee replacement and long-term health outcomes following Long COVID). The Partnership involves academics and public contributors from Manchester, London (Kings and Imperial), Edinburgh, Oxford and Cambridge, in collaboration with Health Data Research UK, Google, Verily Life Sciences and GSK.
