Monetize Me? Privacy and the Quantified Self in the Digital Economy

Lead Research Organisation: Open University
Department Name: Faculty of Sci, Tech, Eng & Maths (STEM)

Abstract

Lifelogging and self-quantifying used to be niche areas for athletes, people with certain medical conditions, and those with the time, money, and motivation to use expensive specialist equipment to monitor themselves. Now the technology for ordinary people to track and analyze many aspects of their lives is becoming both affordable and invisible, requiring little effort or expense to collect. There are many business models based on mining the so-called 'digital exhaust' of people's online activity to provide apparently free services. The fact that so many more people are now able to automatically log so many aspects of their lives (beyond which web pages they visited) is creating opportunities for new business models to actually provide services for the people generating the data. For example, some people may wish to sell their data for cash rather than give it away, some may wish to donate it to worthy scientific causes, such as health research, while others may wish to share data only in a non-identifying aggregated form or perhaps not at all. Lifelogging data can range from relatively benign (such as number of keystrokes typed in a day) to the highly personal (such as the emotional arousal state) and the ways in which the data is shared may be highly nuanced.

This project seeks to understand how the privacy and sharing requirements vary across different demographic groups and to build a sharing and privacy infrastructure specifically designed for lifelogging data.

Planned Impact

We propose a number of specific pathways to impact which are based on strong existing stakeholder relationships and ones which we will foster as the project progresses. The project impacts will stem from the range of engagement activities planned, both within the NEMinDE community and project stakeholders. The proposed research will benefit from an advisory board comprising representatives from the QS community, Lifelogging App Development organizations, Consultancy Organizations, Academics and the UK's Information Commissioner. The advisory board will guide the development of the empirical phases and, in particular, will assist the project team in creating short, medium and long term impacts for the work. Activities aimed at creating impact will include:
Academic dissemination (AD): in scholarly and technical venues. This activity will create impacts within the academic community in terms of new thinking about privacy and appropriate NGOs which should eventually influence the adoption of technical standards;
Alumni network and regional contacts (ANRC): the OU's huge alumni network of business practitioners hold regular events where OU research is disseminated. We would take full advantage of this to inform our community about privacy issues within lifelogging and responsible business models for companies handling lifelogging data;
Community engagement (CE): engagement with the specific communities involved through their blogs and fora. This includes not only the QS community but broader consumers of lifelogging devices and online services related to them, including consumers with low levels of health literacy;
Media engagement (ME): trade press, consumer press, broadsheets and BBC proprietary programming. In order to continue to empower the consumer, we would utilise our considerable media contacts and expertise to broadcast the results of the research to a wider audience;
Programme workshops (PW): to discuss relevant privacy research across NEMinDE, to create potential synergies with other funded projects in the programme;
Strategic visioning workshops (SVW): for business participants as part of the project's activities and on an on-going basis afterwards. This would create impacts within the business community and ensure our third deliverable is understood by its respective stakeholder group; and
Stakeholder workshops (SW): to be held at the end of the project to share results. Separate workshops would be held for consumers, including those with low health literacy levels; private sector and regulators/industry bodies. In particular this would help to generate a future research agenda as well as define any intellectual property which may arise from the project.

Publications

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Mehta V (2021) Privacy Care A Tangible Interaction Framework for Privacy Management in ACM Transactions on Internet Technology

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Rawassizadeh R (2015) Wearables has the age of smartwatches finally arrived? in Communications of the ACM

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Price B (2017) Logging you, Logging me A Replicable Study of Privacy and Sharing Behaviour in Groups of Visual Lifeloggers in Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies

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Gooch D (2020) How are you feeling?

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Mehta V (2016) Privacy Itch and Scratch

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Price B (2018) Feel My Pain

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Spiller K (2018) Self-Tracking

 
Description Findings have led to a patent application for a wearable device to improve privacy awareness and to the design of devices used in hospital to help patients self-report pain. The pain logging device has also lead to a patent application.
First Year Of Impact 2017
Sector Digital/Communication/Information Technologies (including Software),Education,Healthcare
Impact Types Economic

 
Description Prof Price invited to participate in Nuffield Bioethics in focus worksho:p The human-technology frontier: biohacking, cyborgs and wearables
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description Written Evidence to House of Lords Select Committeee
Geographic Reach National 
Policy Influence Type Gave evidence to a government review
URL http://oro.open.ac.uk/68064/
 
Description Citizen Forensics
Amount £1,093,594 (GBP)
Funding ID EP/R033862/1 
Organisation Engineering and Physical Sciences Research Council (EPSRC) 
Sector Public
Country United Kingdom
Start 09/2018 
End 08/2021
 
Description Exploring Community Responses To Health-related Community Displays
Amount £19,401 (GBP)
Funding ID BB/T018194/1 
Organisation Biotechnology and Biological Sciences Research Council (BBSRC) 
Sector Public
Country United Kingdom
Start 02/2020 
End 09/2020
 
Description SAUSE
Amount £1,330,879 (GBP)
Funding ID EP/R013144/1 
Organisation Engineering and Physical Sciences Research Council (EPSRC) 
Sector Public
Country United Kingdom
Start 04/2018 
End 03/2023
 
Description SAUSE: Secure, Adaptive, Usable Software Engineering
Amount £1,330,879 (GBP)
Funding ID EP/R013144/1 
Organisation Engineering and Physical Sciences Research Council (EPSRC) 
Sector Public
Country United Kingdom
Start 04/2018 
End 03/2023
 
Description SERVICE: Social and Emotional Resilience for the Vulnerable Impacted by the COVID-19 Emergency
Amount £400,243 (GBP)
Funding ID EP/V027263/1 
Organisation Engineering and Physical Sciences Research Council (EPSRC) 
Sector Public
Country United Kingdom
Start 08/2020 
End 01/2022
 
Description STRETCH
Amount £1,049,532 (GBP)
Funding ID EP/P01013X/1 
Organisation Engineering and Physical Sciences Research Council (EPSRC) 
Sector Public
Country United Kingdom
Start 04/2017 
End 03/2020
 
Title Google Play Store scraper for health apps 
Description This code allows researchers to extract a list of apps from the google play store according to set criteria. 
Type Of Material Improvements to research infrastructure 
Year Produced 2018 
Provided To Others? Yes  
Impact This was enabling software to allow a study of specific app usage for mHealth. 
URL https://bitbucket.org/ou-rse/playstorescraper/
 
Title Heuristics for Privacy Analysis of Quantified Self mHealth Apps 
Description A set of privacy heuristics were developed to allow comparison between mHealth Quantified Self apps. 
Type Of Material Improvements to research infrastructure 
Year Produced 2018 
Provided To Others? Yes  
Impact Tools were only recently released so no notable impacts at present. 
URL https://figshare.com/articles/Quantified_Self_Privacy_Heuristics_v1/5514082
 
Title London Quantified Self Group Survey Data 2014 
Description These are the results of the London Quantified Self Group survey of tools and practices. 
Type Of Material Database/Collection of data 
Year Produced 2018 
Provided To Others? Yes  
Impact This is the first survey of tool use of the pioneering quantified self community 
URL https://figshare.com/articles/London_Quantified_Self_Group_Survey_2014/5505805
 
Title Selected Apps for each category based on popularity in Google Play Store 
Description This is a snapshot of the most popular apps in each of the categories identified. 
Type Of Material Database/Collection of data 
Year Produced 2018 
Provided To Others? Yes  
Impact Impacts from this may not be realised yet but this will provide a baseline to track change in quantified self apps. 
URL https://doi.org/10.21954/ou.rd.5507146
 
Description Milton Keynes University Hospital 
Organisation Milton Keynes Hospital NHS Foundation Trust
Country United Kingdom 
Sector Public 
PI Contribution Development of lifelogging devices for pain logging.
Collaborator Contribution Medical expertise, helping supply study participants
Impact Outputs are still pending as studies are still running
Start Year 2014
 
Title METHODS, DEVICES AND SYSTEMS FOR CONTROLLING ACCESS TO DATA 
Description The patent is for the 'privacy band' which provides haptic feedback via a wearable device when there are data access requests relating to the wearer. 
IP Reference GB2549991 
Protection Patent application published
Year Protection Granted 2017
Licensed No
Impact Other patents applied for in USA.
 
Title Transcript coding tool 
Description This tool allows multiple coder to tag transcripts for pre-set themes in a browser based tool in order to identify agreement on frequency of themes discussed. 
Type Of Technology Webtool/Application 
Year Produced 2017 
Open Source License? Yes  
Impact No impact yet as not formally announced or publicised. 
URL https://github.com/ciaranmccormick/mm-transcription-server/tree/master
 
Company Name HEALTHTECH UN LTD 
Description The company has developed a product to allow in-patients to self report pain and have entries automatically entered into medical records. 
Year Established 2017 
Impact Currently deployed technology in 2 wards of Milton Keynes University Hospital with one additional hospital trialling it.
 
Description Monetize Me? Privacy and the Quantified Self: New business models in the Digital Economy 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Industry/Business
Results and Impact The business environment that we are operating in has been transformed by digital technology, presenting a host of opportunities across all business sectors. The Quantified Self (QS) is constantly creating new types of information about us, which we may want to share or to keep private.

At this workshop we will present a number of possible future scenarios, and invite you to discuss their implications for the future of QS.

Key questions on the agenda will be:

How can we stay in control of our personal data, and its monetization where appropriate, while engaging with organisations to obtain the products and services that we want?

What are the new business models that organisations need to adopt, in order to persuade us that our privacy will be protected while we engage in transactions of all kinds?
Year(s) Of Engagement Activity 2017
URL https://www.eventbrite.co.uk/e/monetize-me-privacy-and-the-quantified-self-new-business-models-in-th...
 
Description Patient Group Workshop London 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshop 3: Triggering acquired knowledge for self-care
How do we design UIs that trigger the user's acquired knowledge at the appropriate time?

We all depend on our acquired knowledge to make better informed decisions. For people with diabetes who must make important decisions each day, such knowledge gained through experience and trial and error, is crucial for sustainable self-care. In this 1 day we will explore how technology can help to build and activate these important mental models.

Goals:
Exploring methods of interaction to help people with diabetes make use of their personal acquired knowledge.

This 1 day session we will brainstorm, prototype and test ideas for:

Smartphones
Smartwatches
Voice (Echo, Siri)
Chatbots
Light
Adaptive interfaces
Contextual awareness
Year(s) Of Engagement Activity 2017
URL http://www.ideas4diabetes.com/lesson/london/
 
Description Prof Meadows Keynote at Big Data, Business and Society, London Met University 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Keynote address at a one day conference of HR Proessionals and Academics
Year(s) Of Engagement Activity 2018
 
Description Pyliss Court Invited Lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact An invited talk at https://www.phylliscourt.co.uk/ following on from my previous talk at the Royal College of Physicians about patients self-logging data to improve or monitor health.
Year(s) Of Engagement Activity 2020
URL https://youtu.be/rrETqfsbSxI
 
Description Royal College of Physicians Public Lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Public lecture at Royal College of Physicians including practictioners and the general public, covered use of consumer self-logging devices for medical and health purposes. Disusussion afterwards led to follow on talk at a London Club and research contacts
Year(s) Of Engagement Activity 2020
URL https://www.rcplondon.ac.uk/events/public-lecture-please-dont-show-me-your-data-yet
 
Description Strategic Visioning Workshop QS17 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Industry/Business
Results and Impact Strategic Visioning Workshop on Monetisation of Quantified Self Data with Practitioners and SMEs
Year(s) Of Engagement Activity 2017
URL http://quantifiedself.com/2016/10/qs17-join-us-june-17-18-amsterdam-quantified-self-conference/
 
Description Workshop 1: Improving interaction with data for diabetes patients 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshop 1: Improving interaction with data
How can we design more engaging User Interfaces that help people more easily understand their personal diabetes data?

This workshop will bring together a diverse and interdisciplinary group to explore new and easier to understand ways of communicating personal data, in order to help people with diabetes to make better treatment decisions.

Moving beyond graphs, charts and tables to discover new and more intuitive ways of interacting with diabetes data such as blood glucose values, exercise, insulin dosages, food and other relevant information.
Year(s) Of Engagement Activity 2017
URL http://www.ideas4diabetes.com/lesson/berlin/
 
Description Workshop 2: Emotional Sensitivity for Diabetes Apps 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshop 2: Emotional Sensitivity
How can we design emotionally sensitive interfaces that draw attention to important but unwelcome information while continuing to engage the user?

For people with diabetes managing blood glucose levels can be a frustrating experience. Interfaces need to alert users to important situations, while being sensitive to the users emotional state. It is especially important to keep users engaged and not add to their daily stress level. In this 1 day workshop we will consider how we might move beyond current strategies, and create more sensitive interactions.
Year(s) Of Engagement Activity 2017
URL http://www.ideas4diabetes.com/lesson/heidelberg/