Last week the Dementia Citizens beta went live. Over the course of the project we noted lessons about doing design research with people affected by dementia and how to make apps that work in daily lives. We’ve written about these learnings on our blog here and over at Nesta here.
Now, to mark this stage of the project, we wanted to reflect on some of the broader themes that emerged through Dementia Citizens and run through much of our work: citizen science, mobile health and digital inclusion.
People with dementia are often stigmatised, or face language that’s clinical, paternalistic, and medicalises their experience. The efforts across the country that combat these realities do tremendous work. Dementia Friends, Your Memories, and A Walk Through Dementia are just a few examples. Citizen science builds on these initiatives by extending the focus beyond public awareness towards a far more active and empowered role for people with dementia and carers. By its very definition citizen science invites participation. People can use their skills, contribute directly to research, and in the process offer a much more human face of dementia. Beyond this, as citizen science enables people to shape research in a much more profound way, it can shift the balance of power in science towards those individuals who participate: they become ‘experts’ too in their own right. For dementia, this could have a significant impact on the community. Across other groups who are marginalised, vulnerable, or in the minority, this same promise of citizen science holds.
When the model of citizen science is transposed to mobile technology and biomedical research, there’s huge potential to learn about human health through larger populations and more granular data. This rests on enough people taking part to extract findings through behavioural measures (as done through games with the Great Brain Experiment and Sea Hero Quest) or through simple questions triangulated with passive data sets (as done on Patients Know Best or 23andme). For this to become a reality digital citizen science platforms have to be engaging. Comparisons will always be made with consumer digital products, so anything less will reach a small user base at best, compromising analysis through lack of scale. Traditional research techniques, such as clinically validated self-reporting questionnaires, need to be adapted to fit within fast-paced mobile lives (see our Dementia Citizens learnings here). Academic researchers recognise the value from innovating data collection methods with digital technology, but it’s still perceived as a risk. As the culture of science shifts to acknowledge this risk and build models that work within it, it opens up the possibility for research that is more accessible to diverse groups, that involves more members of the public, and that yields insights with a far richer, in-depth and nuanced reflection of human life.
Citizen science captures people’s imagination. People generously share time, energy and creativity to uncover new knowledge, shape solutions for the future and be part of an active community. Successful platforms span Galaxy Zoo, Hooked on Music and WNYC’s Clock Your Sleep. As people and patients are increasingly involved in research under the guise of citizen science, their generosity cannot be taken for granted. Citizen scientists need to feel aligned with the principles of the projects they contribute to. Especially when it comes to sharing personal data - as is the case for biomedical projects - the intentions behind the research are all the more important. If there’s any sign of ethical breaches, people simply won’t sign up. As a result the scale in numbers that citizen science often requires will not be there. For this reason, citizen science can’t ever be about pure commercial interests, research for the sake of it, or a tokenistic tool for recruitment. Citizen science studies must benefit society, and they must be transparent. To continue capturing people’s imaginations, citizen science has to be done with integrity.
People’s lives are busy. Anything introduced into their daily landscape has to give a tangible benefit, and prove itself early on. With digital services it’s all too easy for engagement to fall by the wayside, to be a frustration, an unwelcome nudge, or to simply be forgotten. People always find creative ways of circumventing the wishes of benevolent health technology. A Superflux video last year captured this perfectly. For digital health to achieve the scale it promises it must acknowledge these daily realities: appreciating both the context of its use and drawing people in through ways that are involving, inclusive and adaptive to the messiness of everyday lives.
Digital inclusion, the buzzword of government’s strategy to make bring every person in the country online by 2020, won’t happen through a focus on technology alone. It might seem obvious, but all too often technology projects take a very narrow view, without a broader recognition of the impact of people’s social lives on digital skills. From the start in our work with Dementia Citizens it was clear that people with dementia can learn to use digital technology if they don’t have the skills already; they just need support through family, friends and a respectful and reassuring ear. Recently, digital inclusion was rebranded as digital engagement, in recognition of the role that social networks play. Other projects, like the NHS Widening Digital Participation co-ordinated by the Tinder Foundation, deliver digital-skill training by working closely with community groups, networks and champions. Our hope is that these point the way towards a far broader appreciation of the very social thing that digital technology is.
These strands point towards profound shifts happening in science and health. As the methods of science and tools of technology evolve, research projects become perhaps more participatory, more transparent. By providing communities with a platform for action and empowerment, they can even become a force for social change. The very definition of citizen science itself, here, I think also comes into question. It’s not just about science at scale, nor simply about harnessing digital technology for new datasets. The possibility of public involvement at a deeply thoughtful level remains at its heart.