Digital Phenotypes – Health research in the digital age
Wellcome Trust Frontiers meetings bring together diverse groups of global thought leaders to explore an issue and help Wellcome think differently about an area of research and how it links up with society. The second in our new series of Frontiers meetings, ‘Digital Phenotypes- Health research in the digital age’, explored the opportunities and challenges of using digital technologies as new methods for basic and translational biomedical research. Here, Holly Baines from the Insight & Analysis team reports on some of the main messages from the meeting…
‘Digital Phenotypes’ describes the use of new digital technologies to capture individual data, outside of current healthcare settings. This includes anything from wearable fitness devices and mobile phone apps, to social media and citizen science. These digital technologies and the vast amounts of data they generate provide new and innovative approaches to basic biomedical research, through monitoring, data collection and classification as well as the development of new products and therapeutics in translational research.
We brought together a diverse group of leading scientists,technologists, industrialists and Frontiers Innovators (early career researchers who applied to attend the meeting) to advise Wellcome on what actions we, and others, could take to maximise the impact that digital technologies can have for science and research.
Digital Phenotypes: the opportunities
Day 1 of the meeting kicked off with discussions of the wide-ranging opportunities that digital technologies present for research and the advantages over more traditional methods. Digital technologies allow us to capture not only more data from wider audiences, but different kinds of data, allowing us to build rich longitudinal datasets whilst also directly engaging citizens with research. The appropriate use of these technologies and organisation of the data into something meaningful opens a number of doors in research, from improved understanding of chronic and infectious diseases, to improved understanding of patient experiences and adverse drug reactions.
Digital phenotypes: the Challenges and possible solutions
The use of digital technologies in research does not come without its challenges, and the second part of the meeting focused on discussing these barriers and – more importantly – brainstorming possible solutions. Here are two of the themes that were discussed:
- Understanding the landscape
The challenge: The technology landscape has shifted dramatically in a short time period, with an explosion in the availability of devices and data produced. Consequently, new technologies and the resultant data tend to be used haphazardly in research with few studies using them in a valuable way to address a health problem.
Possible solution: There is the need for a ‘roadmap’ which clearly lays out: the technologies and data available, the key stakeholders involved, how new technologies and digital phenotype data are and could be used in research, the ethics and policy implications and the legal and regulatory issues.
- Understanding and engaging the community
The challenge: The use of new digital technologies in research relies entirely on user engagement, but we have very little understanding of what drives and sustains this engagement, or what is actually useful to individuals.
Possible solution: Co-design and user feedback can facilitate sustained engagement and should be ingrained in research that uses new technologies; designers, social and behavioural scientists are needed to facilitate this.
If you want to learn more about the other key themes discussed and the advice given please read the evidence synthesis of the meeting on the ‘Digital Phenotypes’ webpage.
At the end of the two days it was clear that genuine progress will only be made in this area if the funding environment is more agile, there is greater support for innovation and experimentation as well as multi-sector and multi-disciplinary partnerships at a global scale.
We are now prioritising areas where Wellcome could make a difference, looking at new and current activities that could promote closer links between the funding of science, technology and innovation. We will share these plans as these become more developed.
If you would like to learn more about our Frontiers meetings please visit the Frontiers webpage.