The language used around HCI research into digital health and wellbeing monitors, trackers and coaches reinforces the idea of information ownership by the data subjects themselves. We read about personal informatics, quantified self, life logging, self-tracking, and personal enhancement.

These labels suggest an intimacy and a sense of possession. Are we to believe personal informatics are exemplars of Suchman’s complementary machines and humans, where the outcome is relational, situational and can change over time? People’s capacity to act is reconfigured as they interact, but is their agency being thwarted by lack of awareness?

Neither an individual view, nor a peer-to-peer view, seem to capture the richness of relationships, or the variety of motivations, or the range of use. As individuals interact with their technology and social clusters, and as they experience, curate and share their lived data, we need a broader perspective (Kuutti, 1996) which examines how other parties in the data universe interact. The situation boundaries are wider than the person and their apps.

Personal informatics extends beyond the individuals themselves and their own social clusters. The data have value as assets to the organisation providing the services; it also has value to other organisations who might want to use the data for legitimate or improper purposes, and finally it has societal value as interpreted by local and national government, regulators and other bodies (Watson and Leach, 2010).

Individuals have little knowledge of the ways their data might be used, and how or when this might affect them negatively, as it flows through these different parties. It is not so much an ambiguity in explanation, but a complete hopelessness in understanding and control, despite changing legislation and regulation or the existence of privacy notices. The situation they believe they are in is far removed from reality – the plans exist and the individuals are not in control.

If citizens cannot achieve an understanding and insight into what is happening in personal informatics and the trade-offs being made (Pirolli and Russell, 2011), what hope is there that they can take intelligent action? Personal informatics is a long way from individual sensemaking, and currently more akin to data collection sensors for exploitation by other parties – individuals as instrumentation.

Fortunately, the individual-centric research view is changing, with research into the social motivations of these technologies such as understanding the social contexts and practices. Our models, methods, techniques need to perceive the wider picture to understand what is happening and what the side-effects are, at both individual and societal levels. In the meantime, change the language from Personal Informatics – it is Exposure Informatics.

References

Chris Elsden, David S. Kirk, Abigail C. Durrant. 2016. A Quantified Past: Toward Design for Remembering With Personal Informatics. Human-Computer Interaction.
https://doi.org/10.1080/07370024.2015.1093422

Kari Kuutti. 1996. Activity Theory as a Potential Framework for Human-Computer Interaction Research. Context and Consciousness: Activity Theory and Human Computer Interaction, MIT, Massachusetts, USA.

Peter Pirolli, Daniel M Russell. 2011. Introduction to this Special Issue on Sensemaking. Human–Computer Interaction 26, 1–2: 1–8.
https://doi.org/10.1080/07370024.2011.556557

Colin Watson, John Leach. 2010. The Privacy Dividend : the business case for investing in proactive privacy protection. UK Information Commissioner’s Office.
https://ico.org.uk/media/1042345/privacy-dividend.pdf

Photo

Author’s own. Cyclists participating in Sky Ride London 2010.

Accessible and validation methods for collecting and assessing dietary information is critical to the many public health interventions. Traditionally, a nutritionist interview participants to capture what has been consumed in the previous 24 hours, and this is repeated several times to estimate average consumption. To conduct such interviews at scale requires large numbers of trained nutritionists, who use their expertise to probe for additional information which is often missed or forgotten. To analyse dietary information, each food and amount is then manually coded and entered into a database to produce the nutritional output, a process which is timely, expensive and can be prone to error.

Intake24 is a free multilingual online dietary capture and analysis tool which provides the same quality of data at a significantly lower cost. Based on the multiple-pass 24 hour recall method, the system enables participants to input all food and drink consumed, estimate portion size using visual guides, and review their input at each stage. The system has been designed to ask a series of prompt questions if food or drink items are considered missing, such as “did you have any butter on your toast?”

Intake24 automatically links to the food composition data and the weight of the food from the chosen portion size to calculate the nutritional output. The data from dietary surveys using Intake24 is available online and can be downloaded straight into a spreadsheet for easy analysis.

For more information please contact Emma Simpson.

Open source sensors developed at Open Lab, Newcastle University, are behind the largest study of physical activity ever conducted.

Biobanks are becoming an increasingly important tool in medical research, offering an opportunity to study human health on a massive scale. Since 2007 UK Biobank has collected data about the genetic and biological information of half a million volunteers. They provided blood, urine and saliva samples and detailed information about their health, so that researchers can investigate possible genetic links to major illnesses such as cancer, heart disease and diabetes.

Since its foundation UK Biobank has expanded to collect data on other areas as well, including diet, bone structure and physical activity. To measure activity UK Biobank uses sensors, worn on the wrist for a week, that measure the movements of participants. These sensors were designed by Open Lab.

This has been the biggest physical activity study in history. 103,712 people wore the sensors, contributing a total of 2,000 years’ worth of movement data. This data can be used to investigate the impact of physical activity on health. Previous studies relied on self-reporting by participants, but Biobank’s new physical activity dataset offers much more accurate information.

“Large-scale studies are required to reliably understand the causes and consequences of disease,” said Dr Aiden Doherty from the University of Oxford. “UK Biobank’s combination of activity, imaging, genetics, and clinical databases, will soon help us better understand physical activity and its health consequences.”

The study used AX3 acceleration sensors that were designed in Open Lab and manufactured by Axivity Ltd, a Newcastle University spin-out.

“It’s actually a relatively simple device, in many ways just like your average wearable fitness tracker but with the capability to store the raw unprocessed data on the device,” explained Patrick Olivier. “However, key to the success of this project was the low cost of the device, compared to commercially available alternatives, and that we were able to adapt the device programming interface to UK Biobank’s central database of participant contact information so that the right device was sent to the right person, allowing us to link it to the other data they provided on their behaviour and health.”

Open Lab also helped to analyse the data collected by the sensors. The Biobank data will be available for use by researchers around the world, as Dr Tim Peakman, Deputy Chief Executive Officer for UK Biobank, explained.

“A huge amount of work has gone into reaching this milestone,” he said. “Including setting up and sending out thousands of devices, retrieving and downloading their data and checking its integrity, and addressing the many challenges of processing this data, which is now available for other researchers to request by making an application to the UK Biobank team.”

Not only is the data open to other researchers, but the sensors themselves are open source, meaning that other studies could exactly replicate the design.

Professor Nick Wareham, Director of the MRC Epidemiology Unit, said: “UK Biobank has redefined what is possible in the field of physical activity epidemiology; it is truly a game changer, effectively dispelling the myth that objective monitoring cannot be done at this very large scale.

“This development not only makes it possible to robustly examine associations and interactions between activity, diseases, environmental factors and genetics, it also paves the way for stronger surveillance systems of physical activity at the global level.”

The project involved researchers from Newcastle University, the University of Cambridge, University of Oxford, University of Salford, and University of London, as well as UK Biobank. Development of the AX3 sensor was supported by funding from the Research Councils UK Digital Economy theme.

“Large Scale Population Assessment of Physical Activity Using Wrist Worn Accelerometers: The UK Biobank Study” http://dx.doi.org/10.1371/journal.pone.0169649

Written by Mark Sleightholm. For more information please contact Patrick Olivier.

Clinical Research Networks recruit participants for NHS clinical research projects, and Stephen Lock looks at ways to use technology to improve this process. He explores ways that a better use of technology can lead to patient-centred research delivery models.

Digital technology has opened up countless opportunities for collecting, sharing and using data: “a fundamental paradigm shift in our world,” according to Digital Catapult’s Lucie Burgess.

“What we’re seeing now is new models of companies being able to engage with users through their personal data in a way that builds trust,” she explained. “That can build all sorts of commercial opportunities and is really good for the user because it gives them access to new products and services, ways of living their life that they might not have thought about before, but you’ve got to do that in a way which really builds trust.”

Lucie is the Head of Personal Data and Trust at Digital Catapult, which works with a wide variety of organisations to support the development of new technologies – to remove the “barriers of innovation which mean that that technology hasn’t reached its full maturity, capability or adoption”. The Personal Data and Trust Network works with industry, research and the public sector to explore innovation with personal data.

Data sharing “both good and bad”

Some GP surgeries are starting to give patients access to their medical records online, but this progress is slower than Lucie would like. She envisions a world where people participate more directly in their health, hoping that “we move away from this patriarchal model that we used to have towards one were people are actively involved in managing their own health and wellbeing and fitness.”

She continued: “there’s lots of evidence to show that you have better health outcomes if that’s the case. So personal data is really important.”

Thirty years ago mobile phones let people phone on the move, but this has now become another source of personal data, and location data is now collected by default on mobile devices. Lucie highlighted the benefits of this – “it means that you can access all sorts of services like online maps and content that takes into account your locality” – it has its downsides. “It also means that people potentially know where you are, and that’s both good and bad,” Lucie suggested.

So while on the one hand we now have technology to send people notifications if they pass a shop that sold something they were looking for, we also see ads based on keywords we have written in our notes.

“I was writing some notes recently in a business meeting about block chain, and then five minutes later there were all sorts of books and services being advertised to me about block chain,” Lucie recalled. “In actual fact it was quite useful in that particular context, but it might not be, and there are obviously massive issues for security.” She pointed out the potentially life-threatening danger of a hacked autonomous vehicle.

Decisions based on algorithms

Concerns about data are about more than just hacking, though. Trust and perception play a big part, and part of Digital Catapult’s research is into public attitudes towards data. The Investigatory Powers Bill has attracted controversy as it passes into law, and Lucie expressed concern at the level of surveillance and the quantity of data that telecoms providers will now be required to keep. More generally, though, she believes the issue is in a lack of understanding about the types of data that companies collect. Another important piece of upcoming legislation is the General Data Protect Regulation, which comes into force in 2018.

The GDPR will give people more power to question decisions made by algorithms based on their personal data. “On the most anodyne side of things, they’ll predict our shopping behaviours – it’s not really that much of a problem if you get offered a red pair of shoes instead of a black pair of shoes – but if you’re prevented from access to credit, or your health insurance is going to be more expensive because of data that you’ve provided… those are important decisions that are made about us and we’re going to have a right under the new legislation to challenge those decisions.”

Food labels and data receipts

One of the projects Digital Catapult is working on is a system of “food labels for privacy”. Like food labels on food, these little symbols will let people see at a glance what kind of data is being collected about them and what it will be used for. In the spirit of participatory design and empowering people when it comes to their data, the public will be asked to choose the five things they feel most warrant these labels, and even what the icons should look like.

“There’ll still be a link to the privacy policy,” Lucie assured. “But we’re trying to help organisations convey privacy policies in a much simpler way so that people don’t have to read something the length of Hamlet to understand what’s being done with their data.” For data protection and privacy, you can contact new york privacy compliance, that provides layers of online security

The other project which really excites Lucie is the idea of personal data receipts. These are currently being trialled at the Digital Catapult Centre, but Lucie hopes it will grow and be used more widely.

Rather than signing into a book with a pen, visitors to the Digital Catapult Centre sign in electronically and provide basic information such as their name, company and email address. They will then automatically be sent a personal data receipt which will tell them the type of data they provided – “we don’t say back to them what the data is, obviously, because that in itself would be a security breach,” – and how Digital Catapult will use that data. Crucially, the receipt informs people how to have their data removed from Digital Catapult’s databases.

Several people have taken up this offer to have their data wiped, and also people that have provided false email addresses because “they don’t want to give us the data in the first place!” Interestingly, one person gave a false email address which happened to be a real email address for somebody else, demonstrating why the receipts do not repeat the data itself, only the type of data provided.

Lucie stressed the advantages of sharing data, and believes that by making data collection and usage more transparent, and by giving people more control over their own data, data can benefit everybody. She concluded: “Choose what data you share. Do it in the knowledge of how it’s going to be used. Recognise that it can have some benefits and some risks.”

Though there is an increasing amount of work on mental health within HCI, there is little work reported on digital technologies specifically for those affected by self-harm. A literature search showed that most existing work within the context of self-harm had been conducted within psychiatry and psychology, and I began to imagine the ways in which technologies could help those affected by self-harm: not just those who engage in the practice, but their friends and family, too.

We decided to configure and run a hackathon as an opportunity to explore the opportunities, challenges and best practices involved in designing for those affected by self-harm. Although there have been very few hackathons in such challenging contexts, we felt it was an excellent opportunity to bring together diverse communities of people in an environment where they could learn and create together.

After careful deliberation over an appropriate and sensitive name for the hackathon, we decided upon Self-Harmony and it ran over two days in April 2016. Teams of developers, makers, healthcare practitioners, and those with lived experience of self-harm were asked to conceptualise and prototype digital products or services for those affected by self-harm. Seven teams formed around three challenges and created seven diverse digital tools – ranging from a digital distraction box (shown above), to an e-stress ball.

Often with the end of a hackathon comes the dispersion of ideas, teams and concepts, and hackathons are often criticised for this very reason. We decided to extend the conventional hackathon format by holding a series of critical engagements with mental health clinicians and charity workers who provided appraisal of the prototypes and designs.

In doing this, we wanted to reveal the key strengths and limitations of the designs and expose design challenges for future HCI work that considers self-harm. The stakeholder critiques have also allowed us to consider the benefit of extending and rethinking hackathons as a design method in sensitive contexts.

For more information please contact Nataly Birbeck.

How do you find willing participants for a design workshop to develop a mobile application for people who stammer? You crash their national conference, of course.

While putting the user at the centre of the design process is a great way to ensure that the end product will actually be something which interests them, this becomes a whole lot more difficult when willing participants can’t be found. Undertaking design workshops with people who stammer can be tricky if people do not want to contribute.

The nature of stammering is such that many people do not wish to disclose or discuss their stammer. Stammering is characterised by dysfluencies in speech, alongside possible secondary behaviours such as facial grimacing and social avoidance. Our attempts to find participants within Newcastle yielded only a few names. However, when the British Stammering Association (BSA) heard of our search, they offered us the opportunity to attend their national conference being held in Manchester in early September.

The BSA is the national charity for people who stammer in the UK, advocating for and raising awareness of stammering. Every two years the BSA hold their national conference, bringing the stammering community together from across the country (and beyond). While research and therapy also features, the primary attendees of these events are people who stammer themselves, ready to socialise, share their experiences and learn from their peers.

And, with a conference full of people who stammer who are willing to engage in discussions related to their stammer, what better place to find participants for our design workshop?

Working the workshop

We piloted our workshop in Newcastle with two participants and received their feedback on the activities with the view to adapting them to suit a potentially larger group in Manchester. Then we took the show on the road and secured a room for the Friday evening of the conference. Despite being a late addition to the programme, our event was added to the official schedule, advertised as the first workshop of the conference, and we were given a whole lecture theatre to run it in. We had 15 participants across three tables who were asked to complete discussion-generating tasks, before coming together as a larger group to share ideas.

In attending the conference, we were able to reach people who are open to talking about their stammer and sharing their experiences. Conversation flowed at all of the group tables and loads of great ideas came out of the workshop. Now, their input can be used to develop a mobile application which will hopefully aid an even broader range of people who stammer.