Welcome to our first post of the year! To kick-off our first Mobile Health Meetup of 2017 (and our 7th meetup so far) we invited Ivor Williams - Senior Design Associate at the Helix Centre and co-founder of Humane Engineering - and Cassie Robinson - director of strategy and research at Doteveryone, service designer and researcher at the Co-op, and co-founder of The Point People - to talk about digital and service design for end of life care.
Ivor introduced the conversation with an overview of how our traditional approaches to death - across both design and contemporary culture - aren’t appropriate for the reality of people’s experience. Designers, for instance, have a tendency to simplify complex topics. While this is often heralded as a virtue, in the context of end of life care it can miss important nuances and the deep sensitivity required at every stage.
Similarly, the potency of myths around heroic, peaceful or poetic deaths actually impedes our ability to plan for death in a realistic way. Just as patients, friends and family may find it difficult to make decisions around end of life care, the conversations can be equally difficult from the perspective of healthcare practitioners. Trained to cure disease and save lives, junior doctors often feel unsupported and lack confidence around the relevant vocabulary to engage in meaningful end of life care discussions.
Changing these behaviours is difficult. Both Cassie and Ivor described how the culture of healthcare is so embedded, and how challenging it is to replace or introduce new processes or artefacts. As an example, Cassie described how even just addressing end of life issues across a person’s lifetime could improve how we deal with death at both an individual and system level.
Compassionate design can also play a role. In a project to redesign the Do Not Attempt Resuscitation (DNAR) form, Ivor illustrated how a new type of tool - in both physical paper and digital formats - could help to prompt and guide humane conversations around end of life care. Cassie suggested that technology can be used to develop a better understanding of who is having end of life care conversations, how authorship of information is distributed across the healthcare system, and what kind of information is valuable, to whom, and when.
Through the conversation, we also explored the relevance of aesthetics in designing end of life care, and how digital tools can make advanced care planning simple and frictionless. We talked about how technology, now seamlessly embedded into our lives, is starting to shape how we understand and deal with death. To listen to the whole conversation, check-out the audio/video recordings of the event below.
Thank you very much to Cassie and Ivor for sharing such valuable insights and thoughtful conversations.
And as always, a massive thank you to everyone who attended the meetup. It was lovely to see both new and familiar faces. We look forward to seeing you all at the next one!
For our 6th Mobile Health Meetup, we were joined in the studio by Holly Brenan, user experience designer at ustwo and Alice Osborne, head of design at Active Minds, to talk about designing with the dementia community across digital and non-digital products and services. Our very own Emilie Glazer facilitated the conversation and shared some of our experiences of working on Dementia Citizens.
Holly kicked off the discussion with an overview of Keepsake, a pilot for a digital product that uses natural language processing to support care and management staff in dementia care homes by reducing the amount of time they spend documenting with pen and paper. She spoke about the added value of designing a product from the bottom-up with the direct input of carers and staff.
Alice introduced us to Active Minds and some of their activity products and games for people living with dementia. We had the pleasure to experience first hand the thought, consideration and creativity that goes into creating these products as Alice brought some in for us to explore. She talked about the challenges of designing meaningful activities for people living with dementia, but also about the immense rewards.
Across the initial conversation and later Q&A we spoke about the importance of creating products and services that harness people’s skills, knowledge and stories, and about their potential to bring people closer together. We talked about how digital technology enables personalisation, while physical objects can engage senses in very visceral ways. We shared experiences on how the processes of design, prototyping and research have to adapt in order to be sensitive to the context of dementia, and how a small thing like a sticker can help overcome some of the challenges of introducing new products and technologies into care environments.
For all this and more, listen/watch the whole conversation below and have a look at our Storify roundup of the event.
A big thank you to Holly and Alice for their time and insights and to all those who attended the meetup and joined the conversation!
Also… that wraps up our Mobile Health Meetups for 2016! This year we exchanged ideas around rethinking research ethics for digital health and overcoming barriers in developing medical apps. Thank you to everyone who took part in our events, as a speaker or a curious attendee. We’re already preparing our first meet up for 2017, so make sure you join the community here and we’ll be in touch. See you in 2017!
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.