John had a Fitbit for years. He wore it every day, walked with it, and ran with it. He hoped monitoring his activity would help him lose weight, but he was making slow progress. One day during his annual physical checkup, he decided to show his doctor his Fitbit data, in hopes that his doctor could help him figure out why he wasn’t losing weight. He took out his phone and started to swipe through his month-by-month step counts. John’s doctor tried to learn about his exercise routine and asked questions about it, but they quickly ran out of time.
Many patients and providers try to use data from mobile apps, wearables, and paper journals to help address their health needs, but they often run into difficulty. To understand how patients and health providers track and analyze data together, we interviewed and surveyed more than 200 patients and health providers about their use of patient-tracked data to manage weight or gastrointestinal symptoms.
Providers and patients have various goals for using tracked data, and current tracking apps offer only limited support for these goals. We hope that sharing what we’ve learned about patient and provider goals, and the barriers they face to meeting them, can help designers better support patients and providers in the future. Even before new self-tracking apps are released, the results of our study can help providers and patients more effectively track and review patient health data.
What do people hope to get out of patient-tracked data?
Overall, providers thought patient-tracked data can help in many ways. Patient-tracked data can help providers provide better diagnoses and more personalized treatment. Instructing patients to track helps educate patients and increases patient accountability and motivation to manage their own health. Reviewing collected data with patients can further help providers understand patient values, lifestyles, and challenges, which in turn can help build rapport between patients and providers.
Patients have similar goals, including getting better diagnoses, faster, and using the data to get personalized, effective care. For patients, effective does not always mean the treatment plan that most reduces their symptoms. It can also mean a treatment plan that fits in with their competing commitments and that is low burden. For patients, sharing data can also be a way to communicate the severity of a problem to providers, and to feel that their provider understands more about their experiences outside of the clinic.
Sharing a goal is the key ingredient for successful collaboration using patient generated health data. Goals for tracking and reviewing data drive what data the patient tracks, how often, and in what fidelity. It also directs what summaries and analyses are helpful. When patients and providers fail to agree on a goal at the start of tracking often results in tracking the wrong data or tracking it in a way that does not support intended analyses.
Even when patients and their providers have the same goal for data use and analysis, though, they can face additional challenges, including mismatched expectations for who will review the data, in inconsistent standards and limited data portability between different tracking tools, and in customizing the tracking plan and tools to the agreed upon goal.
Challenges: mismatched expectations
One common breakdown occurs when health providers ask patients to keep a record of one or more aspects of their everyday behavior (e.g., the food they eat or how many steps they take). When providers suggest this, they typically hope patients will use the added awareness to learn how to self-manage their everyday health on an ongoing basis. Providers might only review the data with patients one or two times, with the expectation that patients will continue to track and review the data by themselves. However, when a provider stops reviewing the data without explicitly discussing goals for continued monitoring and review, their patients often believe they no longer need to track. Other times, patients do not believe they have the necessary skills to interpret their data, and so they are disappointed when providers stop checking their data.
Challenges: no standard format among self-tracking apps makes review difficult
As of 2017, there were more than 250,000 health and fitness apps in the iOS and Android app stores. Some patients also track data using paper or spreadsheet with various format. For providers, every time a patient walks in with a new or unfamiliar health tracking app, it becomes a 5-minute challenge of figuring how to to use this app and the data it provides. Instead of struggling with each app’s interface, many providers ask patients to verbally summarize their data.
Challenges: customization is important for supporting individual goals
Different health goals and challenges may require tracking similar information, but focusing on different aspects of the data. For example, both people managing irritable bowel syndrome and people seeking to lose weight may want to track what foods they consume. However, they have different needs. The same food tracking app that helps someone seeking to lose weight by keeping track of calories is not useful to someone who wants to find out which foods cause their symptoms and can distract them from their goals.
Chronic disease and symptom management also relies on individualized treatment. and Even people with the same health condition may have different goals and constraints for how they manage it. Different health providers also prefer various processes for diagnosis and management of health conditions, and these practices also evolve throughout the treatment process. To achieve the desired customization, many providers still prefer paper journals that they can customize based on individual needs. Providers are also able to highlight and write notes on paper journals as they review them. These notes can then become memory aids that support patients at home later, helping bridge what the patient and provider discussed during a clinical visit with what they do at home.
A future of connected, data-driven care
While patients and providers face many challenges, their efforts to integrate patient-generated health data into care demonstrate their belief in its value. New data-sharing frameworks, such as Apple Health, Google Fit, and Withings enable integration self-tracked data from various sources. These companies also work with healthcare organizations, such as Mayo Clinic, American Heart Association, and more than 20 other hospitals around the world, to integrate and summarize data.
Better data integration and portability can enable patients choose tracking apps that better fit their needs while exporting it to formats that are both familiar and tailored to their provider’s needs.
Designers, however, should be careful about reducing rich patient data to standardized, readily quantified forms. This process strips away contextual information. It reduces physical activities to calories burned or active minutes; it strips away information about who someone eats with and whether they are cooking or eating in restaurants. This reduction might be appropriate for some health goals, like testing a symptom trigger or diagnosing hypertension. For other goals, such as counseling for weight management, reduction of data can remove the very information that might be key to the success of that counseling.
While new designs can ameliorate many of the challenges patients and providers face to effectively using patient tracked data in care, there are also steps that patients and providers can take now to have better experiences with existing health-tracking tools.
Recommendations for Patients
Whether you decide to track on your own or your doctor recommends that you track, there are some steps you can take to help the process go better:
1. Be explicit about what you want your doctors to help with reviewing your tracked data. Prepare a 1 to 2 minute summary, so that your doctor can understand your data in a limited time. For example, if you want to confirm your suspicions that a certain food triggers your allergy, let your doctors know. Consider summarizing the data visually before the meeting as well, and perhaps printing it, so that your doctors can review it more quickly. This will help you both use the visit time efficiently and effectively.
2. Record additional information that can help your doctors understand your data. For example, if you cannot have dinner at a regular time because of your work schedule, explaining that to your doctors might help them to plan a better diet for you.
3. Ask your doctors why they recommend a particular app. That way, If you later want to switch to another app that you think might work better for you, you will understand whether the new app still collects the necessary data to support your health provider’s planned analysis.
Recommendations for Providers
If you are a healthcare provider, these activities might help you and your patients:
1. Ask patients why they chose an app. Even if you are not familiar with the app, patient’s’ choice might reveal their goals for tracking or help you understand how much time and effort they can put into tracking. For example, patients might choose an app that lets them compare their data with family members, and which can help motivate health behavior change.
2. Discuss with patients how each of you plan to use the data. Making everyone’s goals and plans transparent can help patients understand how to make the best use of clinic visit time.
3. Provide guidelines to help patients prepare a verbal, written, or visual summary before their next visit. Since there might not be enough time to go over the entire dataset a patient has collected, helping patients effectively summarize their information can help you quickly get to key insights. It also can reveal what they have learned so far, and their remaining questions and goals. Having a clear structure can also help direct follow-up questions to focus on during data review.
Self-tracking data can be useful in the doctor’s office. Researchers and system designers should be more attentive to provider and patient goals and needs in tracking and reviewing patient-tracked data, separately and together. Before new and improved designs and technology are created, providers and patients can communicate datause and their expectations more explicitly to improve the current review experience.
To read more, please see our papers from the Journal of Medical Internet Research and the 19th ACM Conference on Computer-Supported Cooperative Work and Social Computing in 2016. If you have similar experiences, want to know more about the research, or want to share your thoughts, we would love to hear from you! Please contact Christina Chung at firstname.lastname@example.org.
Acknowledgement about funding
This research was funded in part by the Intel Science and Technology Center for Pervasive Computing, the Agency for Healthcare Research and Quality (project #1R21HS023654), and the National Science Foundation (project #s OAI-1028195 and IIS-1344613).