Earlier this week it was a real pleasure to welcome to our studio Dr. Dan O’Connor, Head of Humanities and Social Science at the Wellcome Trust, along with our Mobile Health Meetup community, for the 5th in our series of events around digital health. Our focus: rethinking research ethics for digital health.
In the context of platforms such as PatientsLikeMe and Dementia Citizens, where patients are taking far more active and involved roles in scientific research, Dan proposed that we’re in a period of transitional justice. Traditional frameworks of ethics are perhaps no longer always appropriate: we shift from protecting participants from studies where they have little power and little say, to studies where participants are also researchers, with governing principles of solidarity, participation and openness.
The questions that it leads to are fascinating, and point to the myriad of complexities in this evolving landscape. If emerging ethical frameworks allow patients to lead their own research projects, will population samples become even more self-selecting than they are now? If the cultural norms of self-organised patient groups are based on open sourced communities, what kinds of biases are underlying their behaviour and decision-making, and what does that mean for the ethics of any research projects they take part in?
This and much more was discussed. We’ve tried to capture it all for those who weren’t there, so please do have a listen or a watch, below, if you want to delve in more. A very big thank you again to Dan and everyone for coming along and taking part in such a stimulating and thoughtful evening.
Our next meetup will happen over the next coming months, so join the community here) and watch this space!
#digitalhealth</p>— Ctrl Group (@ctrl_group) #researchethics</p>— Ctrl Group (@ctrl_group) September 19, 2016
What happens when line b/t researcher + subject blurs? #Apomediation— Ctrl Group (@ctrl_group) <a
Solidarity, participation + openness all key to facilitate #apomediation— Ctrl Group (@ctrl_group) @drdanoconnor #mHealthMeetup</p>— Ctrl Group (@ctrl_group) #digitalhealth</p>— Ctrl Group (@ctrl_group) #researchethics</p>— Ctrl Group (@ctrl_group) September 19, 2016
Huge thanks to @drdanoconnor <a
+ all who came to yesterday's #digitalhealth— Ctrl Group (@ctrl_group) #bioethics</p>— Ctrl Group (@ctrl_group) #mHealthMeetup</p>— Ctrl Group (@ctrl_group) <a
We hope you enjoyed as much as we did! September 19, 2016</blockquote>
Medicine that is personalised to the individual is widely acknowledged as a worthy goal for healthcare, but the full promise of personalised medicine is still a long way off.
Personalised medicine can mean different things. It can refer to customizing disease treatment strategies, or making decisions about healthcare and lifestyle based on a person’s genetic makeup, also called precision medicine or genomic medicine. Rather than applying a generic intervention to an illness category, it opens up the possibility for specific drugs, for instance, to be targeted to individuals’ genetic profiles.
Personalised medicine also encompasses n-of-1 trials, in which a clinical study is based on a single participant, with aggregated n-of-1 results bringing in invaluable data for subsets of a population. Here, rather than assuming that populations represent an average patient, an n-of-1 trial acknowledges that no one is average, and so can look for results across different groups of people.
In practice, the promise of genomics and protocols of n-of-1 are nowhere near being an ingrained part of day-to-day medicine and healthcare. Precision medicine is still expensive, brings up a wealth of unsolved ethical and practical questions about data and privacy, and can even potentially act as barrier to behaviour change. Equally, n-of-1 studies are met with regulatory skepticism and pharmaceutical companies whose business models are based on selling to the masses.
Personalisation is also applied in digital health; it’s often one of the most compelling selling points of mobile apps for conditions that range from sleep deprivation to alcohol consumption. Often, these apps are also developed using ‘personas’, a characterisation of a specific type of patient or clinician, with the aim of creating features that are responsive to that individual’s needs. The danger here, though, is that personas can become both overly-detailed; stereotyped fictions which do little justice to the complexity of people’s lives.
Earlier this year, this uncertain advent of personalised medicine was the subject of a session we ran at the Digital Health and Biodesign Workshop in Oxford. We wanted to ask: if personalisation is to be ubiquitous, how can we design digital health services that are also accessible and inclusive? At first glance, a highly individualised service is the polar opposite of a service that can work for everyone.
The challenge that this question set led us to reflect on what we do across our work. It’s an ever-evolving process and set of beliefs, so in the interest of opening up to even more discussion and debate, here are some of our thoughts.
For us, personalisation is a key part of designing digital health interventions.
First, we consider context. Everyone is different, but we all share common experiences, or contexts, with others. Shopping for food, for example, spending time with friends, or preparing a meal for the family. These contexts might arise from different circumstances and be triggered by different events, but they amount to a broadly similar experience, and involve motivations and concerns that feel like very pointed needs for the individual.
When designing a digital health service, we focus on these contexts to create interventions that work for a wide range of people across the different situations they experience in their lives. Deep user research is an integral part of the method - to understand the nuances behind situations, the complexity of people’s experience and the meaning they assign to it. But the focal point is everyday moments rather than the detailed profile of particular individuals.
A helpful tool to design for moments are job stories. A job story is a sentence - based on user research - which frames a problem a user is having to open up possibilities for design. It asks for a clear description of the person’s life context upfront, their motivation and the outcome or benefit that they seek. The structure allows a focus which deliberately avoids persona bias and prescriptive solutions, and instead encourages empathy for the person’s point of view. Designers can then use job stories to shape features, interactions or overall services which accompany people’s experience of these moments.
As part of designing for situations, we think personalised digital health services need to build a meaningful relationship with people. We’ve broken this down into three principles for personalised design:
Inclusive, made for people with different abilities, understandings and motivations.
Involving, so that people feel active, in control, with a sense of ownership and agency in taking part.
Adaptive, learning about people’s behaviour over time and changing interactions as a result.
To give this some life, here’s an example from a project we’re working on. Together with Nesta, we have developed Dementia Citizens - a new citizen science platform for people affected by dementia. In this project we designed, built and researched the two launch apps that people can sign up to as a way of evaluating interventions for improving dementia care and taking an active part in scientific research. And we’re embedding our personalisation principles throughout.
From in-depth interviews and observations we’re developing an understanding of the different situations in which people will use the app; between the person with dementia and their carer together as a pair, at home, at a Singing for the Brain session, or when the grandkids come for a visit. Or even when the person with dementia might be tired and only want to dip in, or when they might want to spend more time with the activity.
The designs allow for each app to be used across these contexts. They enable the person with dementia to take part independently, with their carer, while also keeping others’ involvement open. Interactions enable people to move from screen to screen and go in and out of an activity session at their own pace.
The apps are inclusive, as with every screen we take care to make the language, imagery and style appropriate for people with different kinds of dementias as well as their carers (we wrote about this in more detail in another post about doing research with dementia and in an article on the Nesta blog about our insights from the project).
The apps are involving by giving people the opportunity to take an active part in academic research around dementia care, and they’re adaptive as the interactions and language used in the app shifts based on the person’s name and their age.
At the Oxford session, what struck us most was how designing for personalisation through context and through these design principles is not necessarily easy or intuitive. It’s difficult to cast away a specific image of a single persona in mind, to get a hold of the complexity of even the most simple everyday moments; and it’s challenging to think about how a service can acknowledge a range of situations in people’s lives. It might be that there’s a simpler way of going about it all. And as we continually challenge ourselves in this area, we hope that some day we might discover it, in which case watch this space. But for now it is also clear that this approach does lead to ideas that are imaginative, both single-minded and widely accessible, with the potential to impact the lives of many.
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.
Today we are happy to announce that the Dementia Citizens beta is now live.
Dementia Citizens is a platform connecting people affected by dementia with researchers to find ways to improve dementia care. Now people with dementia and carers from around the country can go onto the website to sign up, take part and test out the two pilot apps - Playlist for Life and Book of You.
As a project with an empowering and active role for people with dementia at its core, it’s been a privilege to lead on the design, development and research of the two apps.
We’ve worked in close partnership with the Nesta Health Lab, academic and charity partners at Glasgow Caledonian University, Playlist for Life, Bangor University and Book of You, and with the dementia community, supported by Alzheimer’s Research UK, Alzheimer’s Society and the Department of Health. In this collaboration we’ve created two apps that bring together academic rigor with engaging activities to improve care and enable citizen science.
The process has been iterative, with three successive phases of design, build and research, including alpha testing earlier this summer. Each phase of design and development involved intense sprints, each time building in learnings from the previous round of research. And each phase of research involved visiting people with dementia and carers at their homes, sharing working prototypes on iPhones and iPads, and understanding people’s experience of the apps in their everyday lives.
We’ve written more about how our learnings from this process are directly embedded in the current apps, over at the Nesta blog here.
For now, we invite friends, partners and colleagues to share Dementia Citizens far and wide. We’d love for as many people as possible to know that it’s there so that they can take advantage of the opportunity to do something new, try out something fun and take part in scientific research.
We’ll leave you with some screengrabs of the apps, as a teaser for what they hold in store.
Over the past year we have been working on the research and design of an exciting new project related to dementia care.
Most recently this involved spending two weeks speaking to people with dementia and their carers in their homes. We wanted to understand their experiences with dementia and explore their reactions to initial prototypes for the project.
When we began to prepare our research, we were told about the challenges of working with people with dementia. The cognitive difficulties associated with the condition mean that they are some of the most vulnerable adults in the UK population. But sometimes, we found that a cautious approach to working with people with dementia - while undeniably important - can sometimes set a tone that is patronising and even dehumanising.
People with dementia crave the respect, dignity, compassion and humour that we all seek in our daily interactions with others. Their personal stories are too important to be obscured by clinical language and medicalisation. It’s just that the modes of engagement that they are most comfortable with tend to shift, and this difference is something that must be acknowledged with sensitivity and compassion.
During our research we learnt how to consider these different modes of engagement. Here are some of the things we discovered along the way:
Be sensitive with language. When we first began speaking to people with dementia and their carers, it immediately became clear that language should be carefully chosen. The word ‘dementia’, for example, can be upsetting; beyond stigmatised connotations it can remind someone who has forgotten about their dementia or disturb someone in denial. Equally, terms like ‘iPad’ can be meaningless for an 80 year old with memory difficulties. Gaby*, for instance, a sprightly octogenarian, did not understand the word ‘playlist’ but was immediately captured by a description of creating ‘a list of your favorite songs’.
Be direct. Abstract sentences and ideas are especially difficult for a person with dementia to understand. As Babette and Sarah explained to me, Sarah with early stage dementia used to have a vivid imagination, but now struggles to hold in her mind concepts described without tangible examples. She preferred explicit prompts that gave her something to react to; being asked how she feels about a specific reference point instead of questions that are open-ended and demand free recall. Similarly, throughout each conversation we introduced simple reminders of the subject, the purpose and the people involved to root each moment of our time together.
Be visual. Another way of being direct is to be visual. As soon as we showed images, instead of just words, to people with dementia we were able to more immediately communicate ideas and understand from them how they felt. With most of our conversation focused on reactions to a prototype, the screens we asked people to swipe through were just as much a useful research tool that brought to life the discussion and brought together everyone involved. The graphics we shared were simple, bright and colourful. Rachel, who cares for her mum, described how these appealed to the need for a tone that is positive and a message that is clear.
Break information down into small chunks. Presenting one single message at a time also grounded conversations. This applied to words and images. When I shared with Paul and his wife and carer Christina a seemingly simple screen (it included a question, a 10-point scale represented by numbers in circles, a smiley face at each end to show the extremes, and a ‘Next’ button) Paul was bemused by what to him was an abundance of potentially interactive stimuli, not knowing which element to respond to. On the other hand, Paul immediately grasped the screens with a single image and a simple sentence.
Follow conversations at their pace, on their own terms. For some people with dementia it might take time to think, respond and find the right way to express what it is they want to say. For others, a single word might spark off a tangent they feel compelled to pursue. Either way, staying at their pace, following the tangents, and allowing the conversation to flow along their terms helped to make them feel comfortable, respected and more confident to be involved. Amongst the people with earlier stages of dementia whom we spoke with, there seemed to be a shyness in speaking up, as if they were ashamed of the difficulties they now experienced and the label they lived under. Beginning a conversation at people’s pace, with their interests and concerns at the forefront, continually directing questions first to them and bringing them into the discussion - all felt necessary to give the reassurance they quietly called for.
Be mindful of body language. As researchers, we were constantly conscious of the way each participant - including ourselves - were physically positioned during the conversation. We sat facing the person with dementia in a way that was inviting and open; maintaining eye contact and encouraging smiles, without putting heads down too often to make notes, our outfits simple and plain - no patterns or colours that could distract. We asked for the person with dementia to sit close to the carer as they would naturally do, to ensure they felt supported and help us observe how they interacted together. We took note of small moments when almost without thinking carers placed their hand on their loved one’s arm, and we followed the person with dementia when they stood up to move around on a whim or point out an object important to them.
Go to people’s everyday context. All of our conversations took place at people’s homes. This was where they felt most themselves, where they were be surrounded by things that are meaningful to them, and by the pictures, the games, the books and albums that families used to support care on a daily basis. All of which told us a story about their personal experience of caring for dementia, and how a new digital intervention could fit within this space. Alice, an 89 year old with dementia, proudly pointed towards the paintings on the wall that she had created over the years to show me how much she loved to do art. Sharon, who cares for her mum Gaby, showed me a box of classic musical DVDs that sparks off their singalongs and a book where she’s gathered together the poems and songs they recite together.
Be generous with attention. Most of all it was clear that people with dementia want to feel in control, stimulated, creative; given attention but not looked down on. The small tips described here all went some way towards enabling this in a research encounter, gently crafting an environment that was fully inclusive.
In many ways the learnings here could be applied to doing research, creating designs and communicating with anyone - not just people with dementia. Like universal design, where you design for extreme users, but basically make something easy for everyone, engaging with people with dementia embraces an approach that is mindful, clear and compassionate at every step.
If you want to learn more about the work we’ve described here do get in touch on email at firstname.lastname@example.org or over Twitter @sp_and_ee.
* all names have been anonymised