For our Spring Mobile Health Meetup we decided to focus on the use of Virtual Reality (VR) technologies as therapies in healthcare. We were fortunate to be joined by Isabel Van De Keere, founder of Immersive Rehab, and VR pioneer Skip Rizzo, who – quite appropriately – was present through Google Hangouts.
Isabel kicked off the conversation with a personal account of her experiences going through physical rehabilitation following a serious accident 6 years ago. She spoke of her frustrations at the therapeutic tools available, and the difficulty in maintaining the motivation to follow repetitive exercise regimes.
She was inspired by this experience to attempt to improve the tools available for physiotherapists, and as a result founded Immersive Rehab. Here she works to design engaging and motivating VR therapeutic programmes for physio rehabilitation. These take advantage of the brain’s neuroplasticity to overcome mobility difficulties such as a patient’s perceived inability to perform certain movements. Isabel describes it as: “it’s like the wifi connection between the mind and muscle has been lost and VR experiences are a tool to help reconnect.”
Skip Rizzo echoed Isabel’s findings in his own account of extensive work with VR in medical practice, from using VR to help soldiers with PTSD, to the development of AI agents within VR worlds. Much like in physical rehabilitation, Skip’s work with VR and mental health allows people to suspend their disbelief, allowing them to revisit traumatic experiences with the knowledge that they are in a safe and controllable environment. Crucially, the brain responds to stimuli in a similar way to how it would in real situations, despite the fact that the patient is aware that they are in a simulation.
As the conversation turned to the ethics of VR in health, the optimism of both speakers was infectious, along with their explanation of the issues still to be addressed. Contrary to criticisms of VR being an isolating activity, VR in therapy can be very social, even collaborative. Isabel spoke of her work with physiotherapists, in which the engagement between patient and therapist was aided by the motivating elements of the VR tool. Similarly, in treatment for PTSD, VR can allow a therapist to be present in the same environment as the patient, and in so doing gain a much clearer picture of the patient’s trauma.
Both Isabel and Skip feel that we are on the brink of widespread uptake and use of VR for a variety of medical applications. With the decline in equipment costs and mounting evidence of the impact of VR in projects such as Isabel’s and Skip’s, the gap between medical research and practice will start to close. Standalone headsets, haptic technology that bring a sense of touch to VR worlds, and responsive interactions through AI, will become increasingly common, opening up the possibilities for even more immersive experiences, and thus therapies.
But as VR becomes normalised, there will be a host of ethical and regulatory questions to solve. How should we handle patient data from VR therapies? Would harassment in a VR environment be treated the same as harassment in the real world? Will actions in a VR world have legal consequences in the real world? As with any potentially transformative technology the possibilities for positive and negative impacts will make ethics a vital component in conversations about the future of VR.
If you’d like to watch the conversation from start to finish, make sure to check out the video of the event below.
Finally a big thank you to Isabel and Skip for sharing their experiences and insights on a fascinating topic, and to the audience for coming over to our studios and bringing such thoughtful questions to the discussion.
We look forward to seeing you at the next Mobile Health Meetup!
Back in August we launched two Dementia Citizens beta apps. Today we’re happy to announce that the research code we wrote for the Dementia Citizens apps is now publicy available on Github. This project taught us just how much digital tools can empower people living with dementia, so it is a real pleasure to share the work more widely. The code is shared under the MIT license which means that anyone is free to use it.
The Dementia Citizens research code repository contains the code that implemented the research features of the two beta iOS Apps: Playlist for Life and Book of You. It includes the common elements across both apps which focused on the user’s participation in a research study - from onboarding, to data collection, and underlying dementia friendly design guidelines.
Below is an overview of these features:
It’s important to note that this code is not a finished framework or library. Instead we hope that other people working in dementia care, design and research can benefit from this work and expand on what we have done. We would love to hear from you if there are any questions about the code, the project, or if you plan to use it. This is an area that we’ll continue to be committed to, so we’d love to talk.
Dementia Citizens is a partnership with the Nesta Health Lab, 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.
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>