Logging in 3 communities ECIL conference 2021
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Presentation developed with Andrew Cox and Laura Sbaffi to summarise our quantitative research into Food and activity tracking in 3 communities of participants - people who run for leisure with Parkrun, people with type 2 diabetes who are members of the Diabetes.co.uk online community, and members of the IBS Network charity.
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Logging in 3 communities ECIL conference 2021
- 1. The Information Literacy of tracked data in three communities: parkrunners, people with type 2 diabetes and people with Irritable Bowel Syndrome) Pamela McKinney p.mckinney@sheffield.ac.uk Andrew Cox a.m.cox@sheffield.ac.uk Laura Sbaffi l.sbaffi@sheffield.ac.uk
- 2. Background: The value of the quantified self • Self-tracking is defined as “practices in which people knowingly and purposively collect information about themselves, which they then review and consider applying to the conduct of their lives” (Lupton, 2016). • Tracking can give people a sense that they are taking control of aspects of their life (Lupton 2016) • Use of apps can motivate people to adopt healthy behaviours, including a healthy diet, increased physical activity and weight loss (Ernsting et al., 2017; Wang et al., 2016) • Self-tracking is a response to the growing perception that we are personally responsible for our health (Sharon 2017)
- 3. Background: issues with self-tracking • Tracking can remind people of the negative aspects of chronic disease, and can lead to unhealthy obsessions (Ancker et al 2015) • Apps are unregulated, and there are concerns about their accuracy (Hoy 2016) • Apps often share user information with 3rd parties, and people are either unaware of this, or ignore the potential risks (Mintel 2017; Yang et al. 2015) • Healthcare providers view patient tracked data as unreliable, due to a lack of diligence, or because patients are less likely to record negative data (Ancker et al. 2015) https://bit.ly/3lQOqc8
- 4. Theoretical background: Information literacy landscapes • An information landscape is centred around the sites of knowledge relevant to an individual for a particular activity • A landscape is characterised by three modalities of information: Epistemic, social and corporeal • The practice of IL is shaped by the modalities of information in the landscape • Self-tracking is one landscape, investigating it allows us to develop a wider understanding of the nature of IL (Lloyd 2006, 2017) https://bit.ly/3xyms7j
- 5. Information literacy in food and activity tracking: our previous research 1. Understanding the importance of quality in data inputs; 2. Ability to interpret tracking information outputs in the context of the limitations of the technology; 3. Awareness of data privacy and ownership; 4. Appropriate management of information sharing. (Cox, McKinney, & Goodale, 2017)
- 6. Research questions The research questions for the study were: 1. What do people in the three communities track, and why? 2. What barriers to effective and safe use do they encounter, particularly in relation to information literacy?
- 7. Research partners: the three communities
- 8. Parkrun • Founded in the UK in 2004, Parkrun is a not-for-profit organisation that organises weekly timed 5K runs in public spaces • Events are free to enter and organised by volunteers, and Parkrun’s ethos emphasises inclusivity
- 9. Type 2 diabetes • A lifelong condition caused by the body cannot use insulin effectively • Blood glucose (sugar) levels are higher than normal • Often diagnosed later in life, but can be present from a young age • Healthy habits such as exercising regularly, maintaining a normal weight and a low-carbohydrate help control the disease • Complications can include heart disease, stroke, blindness, kidney failure and foot or leg amputations
- 10. Irritable Bowel Syndrome • A bowel disorder characterized by abdominal pain & disturbed defecation • Understood as a range of physiological factors that contribute to commonly experienced symptoms, not a single disease • Cause is unknown, but strongly linked to diet and stress • More women than men identify as having IBS
- 11. Methodology • Questionnaire with 12 questions including: a. demographic questions b. questions that focused on use of diet and/or fitness apps and other technologies c. reasons for logging • Advertised online through parkrun UK (http://www.parkrun.org.uk/); Diabetes.co.uk online community and through the IBS Network newsletter and website • 143 responses were received from parkrunners; 140 from diabetes.co.uk and 45 from the IBS Network • Qualitative data collected with the question “Is there anything else you’d like to tell us about your logging practice?”
- 12. Demographic data Characteristic Parkrun Diabetes IBS Gender Male 45 (31.5%) 57 (40.7) 4 (8.9) Female 97 (67.8) 83 (59.3) 41 (91.1) Age 18-24 13 (9.1%) 1 (0.7%) 2 (4.4%) 25-34 19 (13.3%) 2 (1.4%) 14 (31.1%) 35-44 49 (34.3%) 12 (8.6%) 15 (33.3%) 45-54 44 (30.8%) 43 (30.7%) 7 (15.6%) 55-64 13 (9.1%) 43 (30.7%) 2 (4.4%) 65+ 5 (3.5%) 38 (27.1%) 4 (8.9)
- 13. Tracking characteristics of each community
- 14. Parkrunners: tracking habits • 31.5% of Parkrun respondents use a food logging app every day, but 39.2% have never logged their food • Step counters were popular, with 58.7% using one every day • A huge percentage (90.9%) use a device to record their runs either every day or 2-3 times a week (only 1 respondent had never used one!) • Respondents did track their weight, but most commonly (30.8%) only once a week • Parkrunners used more different apps/devices to log, logged running more, than members of the other 2 communities
- 15. Parkrunners: attitudes towards tracking • Parkrunners were primarily motivated by a desire to improve their performance (77.6% agree): I like to be able to track progress and have a goal because I tend to be results orientated. (parkrun) • They reported choosing an app to meet their specific needs (60% agree), and were not worried about becoming obsessed with tracking (56% disagree) • Were most likely to track long term trends in their data: I logged and referred to my steps daily as part of two challenges. One to do 10000 steps a day for one week for WI and another was to do 12,000 on average a day for the whole of Lent. (parkrun)
- 16. Type 2 Diabetes: tracking habits • Around 28% of respondents were daily users of food logging apps, and 17% used a paper diary to record their food. • Over half of diabetes respondents (55.7%) tracked specific aspects of their diet (e.g. sugar) on a daily basis • Most respondents tracked their weight - only 6.4% never do this. • Step counters were popular (41.4% use one every day) but devices to record running were not widely used (70.7% had never used one)
- 17. Type 2 Diabetes: attitudes towards tracking • 75% were motivated to track to help manage their condition • We asked if they were comfortable sharing their logged data, and there was a nearly even split agree, neutral and disagree • They displayed a sophisticated technical awareness of their condition: It is the main cause [that] my HCA1b is now in the 34 area which is normal non-diabetic level, arb intake around 280 grams a day. (Diabetes) • Tracking provided an element of control over the condition: The process of logging helps me stay focussed. (Diabetes)
- 18. IBS: tracking habits • Although IBS is a condition that often involves sensitivity towards certain foods, surprisingly few IBS respondents (17.8%), were current users of food logging apps. BUT over a third of respondents had used one in the past • Most likely among the three communities to track mood (35.5% agree) • Heavy users of step counters – 48.9% use one every day. • Most likely to be worried about obsessing about tracking (38% agree)
- 19. IBS: attitudes towards tracking • They were more likely to criticise accuracy of food logging apps Great to start but cumbersome, especially if you have to log each ingredient every time. I tend to get bored and apps stop getting used. (IBS) • Were the most likely to change their app if they found a better one (73% agree) • Weight management was important to them I started logging on and off in 2015. Logging my food intake has helped me to lose about 7kg and keep it off, taking me from borderline overweight to the middle of the healthy BMI range. (IBS) • Were the least likely to feel comfortable sharing their tracked data with friends and family
- 21. Information literacy: Data quality • Participants from all communities agreed that they are careful about data entry • Agreement that is is challenging to always include accurate entries when food logging “Many apps are US based which means it's sometimes hard to find UK foods, but most of the time the barcode scanning works. Where it's less accurate is things like cherry tomatoes. I don't weigh them every time, but I know an average weight that I use so I can go by quantity.” (parkrun) Difficult when local products are not in database and when item is scanned nothing is heard back. Recipes are tricky to enter. (Diabetes)
- 22. Information Literacy: interpreting tracked information • Highly confident that they could understand the charts produced • Displayed a critical awareness of quality of data produced by apps, particularly if other people contributed data. • Qualitative responses revealed a nuanced understanding of tracked data and relationship with health and wellbeing “I initially used My fitness pal to see how many calories were in specific foods and also to see how the calories balanced against manually inputted exercise. Then I got a Fitbit and linked the 2. I am type 1 diabetic and am interested in keeping my weight at a healthy BMI. I also use Endomondo for logging runs and the training plan in it for my first half marathon in September”
- 23. Information literacy: Data privacy • Only 28% of parkrunners were concerned about how the app provider might re use their data, Diabetes were most concerned • Some concern about long term access to data, but not a massive issue • Some recognition in the qualitative data that geolocation data made public in apps is a potential concern “I stopped using Strava because you could not hide runs from the public, which is a privacy concern as they could see or workout where I live and where I run on a regular basis.”
- 24. Views on sharing data • Different types of information seemed to be shared quite differently. Activity data was quite freely shared. • Food and other bodily tracked data was shared much more reluctantly, and often only with close family, and not doctors “Seeing what my friends are doing (and knowing that they see what I do) is a major motivator for me in exercise and encourages me to get out and do things when I don't necessary feel like it. (parkrunner) I've made it a habit but only log limited information. I do not enjoy social sites so have preferred to use software not linked to my social activities, I like to choose what to share. (Diabetes)
- 25. Conclusions • Food logging is boring and fraught with issues of data quality, information literacy involves developing a critical awareness of what the app does well or not • Activity tracking is easy and enjoyable, data collection is automatic so therefore it is of high quality • Information literacy in terms of interpreting tracked data is high: people understand their data • Data sharing is nuanced, but generally data is not shared with health professionals • People lack awareness of the potential for their data to be sold and re-used (McKinney, Cox & Sbaffi 2019)
- 26. References • Ancker, J.S., Witteman, H.O., Hafeez, B., Provencher, T., Van De Graaf, M. and Wei, E. (2015), “‘You get reminded you’re a sick person’: Personal data tracking and patients with multiple chronic conditions”, Journal of Medical Internet Research, Vol. 17 No. 8, pp. 1–18. • Cox, A. M., Mckinney, P. A., & Goodale, P. (2017). Food logging: an Information Literacy perspective. Aslib Journal of Information Management, 69(2). https://doi.org/10.1108/09574090910954864 • Ernsting, C., Dombrowski, S. U., Oedekoven, M., O’Sullivan, J. L., Kanzler, E., Kuhlmey, A., & Gellert, P. (2017). Using smartphones and health apps to change and manage health behaviors: A population-based survey. Journal of Medical Internet Research, 19(4), 1–12. https://doi.org/10.2196/jmir.6838 • Hoy, M.B. (2016), “Personal activity trackers and the quantified self”, Medical Reference Services Quarterly, 2016, Vol. 35 No. 1, pp. 94–100. • Lloyd, A. (2006), “Information literacy landscapes: an emerging picture”, Journal of Documentation, Vol. 62 No. 5, pp. 570–583. • Lloyd, A. (2017), “Information literacy and literacies of information: a mid-range theory and model”, Journal of Information Literacy, Vol. 11 No. 1, p. 91. • Lupton, D. (2016). The quantified self. Cambridge: Polity Press • McKinney, P., Cox, A. M., & Sbaffi, L. (2019). Information literacy in food and activity tracking among parkrunners, people with type 2 diabetes, and people with irritable bowel syndrome: Exploratory study. Journal of Medical Internet Research, 21(8), 1–16. https://doi.org/10.2196/13652 • Mintel. (2017), Wearable Technology - UK - December 2017. • Sharon, T. (2017), “Self-tracking for health and the quantified self: Re-articulating autonomy, solidarity, and authenticity in an age of personalized healthcare”, Philosophy and Technology, Philosophy & Technology, Vol. 30 No. 1, pp. 93–121. • Yang, R., Shin, E., Newman, M.W. and Ackerman, M.S. (2015), “When fitness trackers don’t ‘fit’: End - user difficulties in the assessment of personal tracking device accuracy”, UbiComp ’15 Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing, Osaka, Japan — September 07 - 11, 2015, pp. 623–634. • Wang, Q., Egelandsdal, B., Amdam, G. V, Almli, V. L., & Oostindjer, M. (2016). Diet and Physical Activity Apps: Perceived Effectiveness by App Users. JMIR MHealth and UHealth, 4(2), e33. https://doi.org/10.2196/mhealth.5114
Editor's Notes
- Hi, and welcome to my talk today, My name is Dr Pam McKinney, I’m a lecturer from the University of Sheffield Information school and I’m here to talk about some recent research into the information literacy of health tracking behaviours in members of 3 communities. This research was funded internally by the Information school, and the research team comprised myself and Dr Andrew Cox and Dr Laura Sbaffi. The results were published in the Journal of Medical Internet Research in 2019 20 minutes!!
- There’s a definition of self-tracking here, essentially it is the practice of purposively collecting data about the self, which can then be used to inform oneself and shape behaviour Research has found that the activity of self-tracking can give people a sense of control over their lives, they have an enhanced sense of self-knowledge, and this can be very reassuring. People find it fun to generate quantitative data about themselves and monitor it over time. Furthermore, tracking using apps and devices can motivate people to adopt healthy behaviours such as increasing the amount of physical activity they take part in, or improving their diet. People get a sense of accomplishment when they achieve health goals There is an increasing narrative around personal responsibility for health, and the need for individuals to take a more active role in caring for themselves. Self-tracking is one way that we can enact this responsibility.
- However, self-tracking is not without issues, and sources highlight a variety of concerns. Ancker’s study of self-tracking among patients with chronic conditions found that participants were reminded of the negative aspects of their condition through the activity of tracking. There are huge numbers of apps available through Apple and Google that claim to support healthy behaviours through tracking aspects of diet and fitness, but these are unregulated, and app developers could make all kinds of spurious claims and recommend behaviours that are not supported by medical evidence. There’s no way for users to assess the accuracy of the information provided to them. Apps share information widely with 3rd parties, and this data can be very sensitive and personal. There are many concerns that people are not aware of the extent to which this occurs, or even if they are aware, they ignore the potential risks.
- The underlying theoretical basis for this study is the model of information literacy Landscapes proposed by Lloyd, who states that becoming information literate requires developing an understanding of what constitutes information in a specific setting, which could be a job, an educational context or an activity in daily life. People interact with multiple areas of knowledge in their daily lives, when they engage with physical and digital spaces and the information in them. So people develop familiarity with multiple information landscapes in their lives. There are 3 aspects to information in any given setting which Lloyd calls modalities, the epistemic or formal information, factual information that is objective and reproduceable. The social modality which is characterised by information shared in the social setting, and the corporeal modality characterised by physical information drawn from the body. Lloyd takes a practice perspective in her work, emphasising that information literacy is not just a set of skills or competencies, but is a situated sociocultural practice. By investigating information literacy in this specific landscape we can widen our understanding of the nature of this complex set of practices.
- Our previous qualitative research took place in 2015 and is published in the ASLIB journal of information management. Participants took part in focus groups and interviews, and reported a variety of self-tracking practices. We discovered 4 elements to information literacy in the self-tracking landscape, and these were used to frame the data collection and analysis of the current study. These four areas are : Understanding the importance of data quality, the ability to accurately interpret information provided by apps and devices, and understand the limitations of these technologies, the awareness of privacy of personal data and how this can be shared by third parties, And Finally, the appropriate sharing of data, taking inro account social norms around tracked data. In the results section I will reflect on these 4 areas and how they were represented in the current study.
- The research questions for this study are stated here – what do people in these 3 communities track, and why, and what barriers to the effective and safe use of tracking do they encounter. Framing tracking behaviours within an information literacy perspective focuses on users’ levels of competence in using information to meet their goals, and this contributes to an increased understanding of the way people engage with information in the health arena.
- I’m now going to introduce the 3 organisations that partnered with us for this study.
- Firstly we worked with parkrun, a non-profit organisation who host free weekly running events around the Uk which take place in parks and other public spaces, Parkrun focus on inclusivity, and many people start their fitness journey with a parkrun.
- Secondly we worked with the diabetes.co.uk online community, who support people with both types of diabetes, but we were particularly interested in those who have type 2 diabetes which is a condition that can be controlled through diet and exercise. Type 2 diabetes is often diagnosed in later life, and can present a range of health complications.
- And finally, people living with Irritable Bowel syndrome, or IBS - being supported by the IBS Network charity. Irritable Bowel Syndrome is hard to define, and is understood as a range of physiological factors, rather than a single disease. It’s a bowel disorder characterised by abdominal pain and disturbed defecation. The exact cause of IBS is unknown, but stress and diet are known to be linked to the condition. It affects more women than men.
- a short online questionnaire was advertised through various methods to the members of our 3 communities, and we had 143 responses from partrunners, 140 from diabetes.co.uk and 45 from the IBS network. The questions focused on use of apps and devices, and motivations and reasons for engaging in self-tracking practices and were largely quantitative, apart from the final question which invited respondents to tell us about their logging practice. We received lots of highly detailed answers to this question.
- This table shows the age and gender of the questionnaire respondents. In common with the general profile of people with IBS, the vast majority of IBS respondents were female, but all three participant groups featured more female respondents than male. In common with the age profile of type 2 diabetes, the majority of the diabetes.co.uk respondents were aged over 40, although apparently this is no barrier to self-tracking and using apps and devices. The majority of Parkrunners were aged 35-54, whereas the IBS respondents had a slightly younger age profile, with the majority aged 25-44
- I’m now going to present the characteristics of each community, focusing first on their tracking habits, and secondly on their attitudes towards tracking.
- There was some use of food logging apps amongst the parkrun respondents, but nearly as many had lapsed use of a food logging app as used one currently, and nearly 40% had never used one. Step counters such as the popular fitbit were used everyday by 58.7% of the respondents, and less than 20% had never used one. Unsuprisingly, using or experimenting with a run tracking device seems integral to the practice of running, with 90% of respondents saying they used one either every day or 2-3 times a week, and only one respondent reporting they had never used one. Only 11% of respondents never tracked their weight, and most commonly participants tracked their weight once a week. Compared to the other communities, Parkrunners used a greater variety of apps and devices and were the most likely to use a running app
- As noted in the last slide, Parkrunners, were really into their run tracking, and a lot of them were motivated to track as a way to improve their performance. We asked participants to state the level of agreement with the statement “I matched my needs to specific featires in the app when I chose it” and 60% overall agreed with this statement. We also asked if they worried about becoming obsessed with tracking, but 56% disagreed they were the most likely to want to track their long term trends, and review their data The quotes here are taken from the final qualitative question where we asked respndents to tell us about their tracking practice.
- Under a third of diabetes respondents used a food logging app, but paper diaries were also used by a small minority to record their diet, and a similar number had used a food logging app in the past. Type 2 Diabetes respondents were the most likely to track very specific aspects of their diet on a daily basis, and this is assumed to help them manage their condition. Weight tracking was a widely engaged with practice, with only 6.4% never doing this. While they used step counters, devices or apps to record running were only used by a few respondents.
- We asked about motivations for tracking, and 75% of the diabetes respondents agrred that managing their condition was a motivating factor. They were evenly split between agree. Neutral and disagree with regard to how comfortable they felt sharing their data, indicating that further unpacking of this aspect of their practice would be a valuable follow-up. The qualitative data revealed that respondents had a sophisticated understanding of their condition, and how tracking could influence the disease and health in general. There was definitely a sense that tracking provided an elemnt of control.
- There were far fewer responses overall from the IBS network, however the data was still interesting and relevant. As IBS is a condition that is influenced by diet, we had expected the proportion of active food loggers to be much higher, but while Respondents had often used a food logging app at one stage, they were critical of their functionality, and we came to the conclusion that the time consuming nature of food logging led to the use being discontinued. As noted earlier, stress is a contributory factor to IBS, so it is not surprising that respondents from this community were the most likely to track their mood. As with the other cmmunitioes, step counters were popular devices. The IBS respondents reported being more worried than membersof the other 2 communities about becoming obsessed with tracking.
- We received many qualitative comments from IBS respondents that were critical of food logging apps At the time of the research, there was no dedicated IBS app that was used by our IBS respondents, and perhaps as a result of theis they were more dynamic in their app use, and willing to change apps when they felt this could be to their advantage Weight management was a reported motivation for tracking, and respondents from the IBS community shared data the least, and reported feeling more uncomfortable with the idea of sharing data with friends and family.
- I’m now going to present data related to the 4 aspects ofinformation literacy in the self-tracking landscape derived from our previous study.
- Information literacy in this landscape is about making sure that data is accurately entered into the apps, and this is a particular challenge for food logging apps which often work well with pre-packaged food, but are much less easy to use when cooking for oneself. Respondents wrote about how they had to develop their own strategies for circumventing perceived problems and inaccuracies. One way to deal with these perceived issues was by becoming a data creator, and entering recipes known to be accurate into the app for future use. Comments also revealed that respondents modified and adjusted data they perceived to be inaccurate, and took some shortcuts for entering well-known food
- A second aspect of IL in this landscape is about confidence in interpreting the data and analysis provided by the app. Most respondents were highly confident that they could understand the information provided to them by the app, and had a critical awareness of the difference between data provided by the app developers and that provided by other users in the app e.g. recipes Some information provided by the apps was perceived the be questionable, for example the way some apps calculated the calorie offset from exercise. The qualitative data revealed a nanced understanding of how the tracked data fit within the overall information landscape of health and wellbeing.
- Understanding data privacy is a 3rd aspect of Information literacy, and most people were unconcerened about potential re-use of their data by third parties, despite understanding that this was a possibility. In fact the Parkrunners in particular were more concerned with long term access to their data, rather than the extent to which it was shared without their explicit knowledge. In the prevous study, participants described a trade-off – they feel that acces to a free app was worth the potential sharing of their data Geolocation identification, for example from the running app Strava was recognised as a particular safety issue.
- And finally, there were marked differences in the extent to which people shared their data, and with who. Activity data was freely and widely shared, often on social media,particularly through the Strava app, Whereas food and other tracked bodily data was much more rarely shared. Surprisingly few participants, particularly from the diabetes.co.uk community shared their data with a doctor.
- Self-tracking is an information intensive activity, involving the user in entering data, interpreting the information outputs of the device, and managing access to the data. Effective and safe use of tracking depends on information literacy. . The study showed that in three very different communities, apps and devices were used quite differently, and members had quite different motivations for an opinions of tracking. Food logging is overhwlmingly tiresome, and fraught with issues of data quality, it seems to be an activity that people adopt and discontinue more than tracking their exercise. A key difference between diet and exercise tracking is that activity tracking happens automatically, it’s not something that takes time or needs much input from the user. As a result, information literacy in food tracking requires people to develop a critical understanding of how exhaustive their tracking practice needs to be to provide them with meaningful analysis, and to achieve their goals