With over 350,000 digital health applications available worldwide, there’s no shortage of options when it comes to individual health data tracking.1 However, accurately interpreting this data to address specific questions and create an effective health plan can be a challenge. Individuals within the Quantified Self community have established a systematic approach to self-tracking and self-research called Personal Science. Through Living Health Lab, we aim to extend the personal science process to anyone with access to a smartphone.
Living Health Lab will be an open source tool that helps individuals notice a health problem, identify possible contributing or alleviating factors, and test any causality. The process will be guided by the individual’s goals and what phase of their Health Journey they are in. They will also be encouraged to designate a health buddy (e.g., a partner, clinician, or friend) to accompany them in their explorations and analyze findings together.
Our goal is to make Living Health Lab available to anyone who asks “How can I pursue a healthier life?”, as a tool that empowers every patient, supplements the care of all medical providers, and promotes a holistic approach to healthcare. This resource will be an open source design project that is freely shared with the public. As we are still in the early stages of the design process, we would welcome any feedback: please reach out to us at LivingHealthLab@goinvo.com.
Chronic pain is a condition that affects over 50 million adults in the United States.2 For many, managing chronic conditions is a difficult process that involves a complex jumble of biological, physical, emotional, mental, social, and cultural factors. With more than 350,000 health and wellness-related applications available to download worldwide, patients can easily monitor their health, yet very few of these services help patients with chronic health problems interpret their data or offer insights to improve everyday health.1
Out of all chronic pain patients, one in three individuals faces frequent limitations in daily life due to the severity and frequency of their symptoms.2 These patients often undergo repeated attempts to manage their conditions. This can mean frequent visits to the doctor’s office and ER, several trials of different medications, and multiple days of missed work due to disability, all of which take a toll on their interpersonal relationships, financial stability, and overall quality of life.3 Members of a community called Quantified Self found inspiration in this disheartening cycle through a self-tracking approach now known as personal science: they became “active investigators” of their own health.4 This method encourages patients to seek answers to their own difficult health questions and concerns through five key actions of self-research5:
In our review of published work in the fields of personal science and self-tracking, we found that this approach has helped individuals with specific chronic conditions, including patients with Parkinson’s disease in identifying personalized sleep and medication routines to improve symptoms of rigidity,6 patients with irritable bowel syndrome in determining possible food triggers,7,8 and patients trying to understand and better manage their migraines.9 Living Health Lab’s mission is to build on this research and broadly apply the process of personal science to patients with all types of health conditions, habits, and concerns. It will help anyone with a smartphone discover how to improve their day-to-day health through guided, thoughtfully-designed explorations.
Living Health Lab is an open source project in the early stages of the design process. In Stage 1, we completed an initial round of research into existing health trackers and personal science, defined our design principles based on research, began visualizing the patient experience, and explored key challenges. We will continue to update this feature as we move through each stage.
The following design principles are based on findings and reflections from the Quantified Self and broader self-tracking communities, combined with lessons from our own experiences designing for patients. These principles serve as a compass as we begin designing and prototyping Living Health Lab.
Storytelling is a powerful tool to represent the patient experience. Here we use Patty’s Story as a way to begin conceptualizing and defining the Living Health Lab service. This is just one illustration of how an individual could discover Living Health Lab and begin taking ownership of their health through the service.
Tracking a wide range of factors without clear goals runs the risk of overburdening; this is why it is critical to ensure that each exploration is designed to closely align with patient goals. Setting up the right exploration is no simple task. With so many different health concerns and questions, there is no one-size-fits-all exploration. Researchers Munson et al. explore how crafting the exploration around the patient’s goals leads to the best results.10 These goals can be distinct from those of their doctor or the intentions of the tool’s designers, and they can change over time as the patient learns more. Additionally, patients may need support to clarify and define their goals, as their goals may initially be undefined or unachievable. Through simple questions, Living Health Lab will direct individuals toward the self-tracking strategy that best aligns with where they are in their own “Health Journey.”
We propose the Health Journey as a general framework for how an individual can shift from a lack of awareness of a health problem to finding healthy habits to manage that problem daily. Our research is only just beginning, and we want to recognize that this framework would not have been possible without the research that’s already been done—we are particularly grateful to those in the Quantified Self as well as all the researchers in the patient self-tracking space for their foundational work.4,10,7,8
The Health Journey consists of three phases: Notice, Investigate, Test. Each phase uses personal science, but the exploration design and analysis method depend on which phase the patient is in. Explorations within each phase serve different purposes. For example, if the patient is in the Investigate phase, Living Health Lab will help them set up an observational study to investigate relationships between factors and visualize the results through correlation analysis. However, if Living Health Lab analyzes a patient’s goals and directs them to the Test phase, they will instead conduct a self-experiment to create space for practicing new habits and assess whether this results in meaningful change. Living Health Lab will set up an exploration that aligns with the patient’s goals and uses the appropriate self-tracking strategy, guiding each individual through their own research study to gain insight into patterns, associations, and discoveries surrounding their health.
Any given individual is more likely to reach their tracking goal if it fits easily into their life. A purposeful, well-defined exploration reduces the burden by keeping tracking focused. While factors like mood or symptom reporting may need to be manually reported, other data can be automatically gathered. With the patient’s consent, Living Health Lab can gather data from their phone, wearables, smart devices, health apps, and more. Living Health Lab will likely suggest automated options wherever possible and limit manually reported factors to minimize the tracking burden.
Living Health Lab can also reduce the tracking burden by providing timely insight and options as the user sets up their exploration. As they choose what to track, they will be given an estimate of how many minutes tracking will take daily to prevent overcommitment. The individual can also designate the duration of the exploration, with options ranging from one to three weeks. We hope to reduce the tracking burden and make health explorations feasible for many people. However, we also will need to validate this hypothesis and develop additional measures through user testing.
Living Health Lab will use multiple approaches to make the experience accessible to a wide range of patients. Assuming that the individual has no prior knowledge of science or statistics, Living Health Lab will infuse clear science tips and ways to learn more, provide clarity into the process, and integrate animation and other visual aids to support understanding. Additionally, content should be written at a fifth-grade reading level.11 Balancing thorough patient education with simplicity is a primary challenge that we acknowledge.
Living Health Lab can become a space for patients to engage in activities that strengthen their knowledge, skills, attitudes, and confidence in managing their health. The Health Journey framework supports a progression from noticing to testing new habits, which leads to valuable insight and meaningful behavior change. Much of the value of the personal science process comes from the patient’s own reflection, drawn out by good questions and bolstered by the support of others. However, Living Health Lab will also need to provide insight into the data to help patients avoid incorrect conclusions and make sense of what they have tracked. Any analysis that Living Health Lab provides must be clear without over-reaching. We recognize that this balance will be a key challenge to overcome.
Even when an exploration doesn’t produce clear findings or show a correlation between factors, an individual can still come to new realizations about their Health Journey. Wolf et al. found that “ancillary benefits include deeper learning about a health topic; generation of new ideas for improving their own care; productive engagement with clinicians; and providing a sense of agency while dealing with the stress of disease and treatment.”5 Regardless of the results for any given exploration, a person can still learn in the process. Ultimately, the goal is for Living Health Lab to help patients see their health and take action to improve their day-to-day health.
At this stage in our project, we have reviewed existing research to identify potential exploration design, analysis, and visualization approaches for the three phases of the Health Journey. Our next steps will be to continue our research and pursue promising avenues through light testing. Take a look at the Appendix to learn more about the study designs, analysis approaches, and visualization methods that we hope to build upon.
We believe this empowered approach to managing one’s health is beneficial for every human. Initially, we plan to target those living with chronic conditions that can make everyday life difficult, like fibromyalgia, arthritis, and migraines. Research has shown those with chronic conditions are often the most motivated to start the tracking process as any insight can directly affect their day-to-day health.7 Patients who are highly motivated to answer their health questions and have much to gain may be the easiest to reach, but many others could also benefit from Living Health Lab:
Living Health Lab will be a collaborative tool for patients and their doctors as they “identify new trends, hypothesize about symptom contributors, generate action plans, and identify new information needs” for chronic condition management and healthy lifestyle promotion.9 This type of collaboration is most successful when both parties share their clearly defined goals. Access to high-quality, patient-generated data might free up the office visit to discuss more targeted concerns as patients come in to share their findings and receive personalized interpretation and direction.12 We see the opportunity for Living Health Lab to facilitate higher levels of patient engagement in their healthcare and make it easier for providers to obtain data on their patients’ day-to-day health.
Living Health Lab will guide people in identifying and understanding their unique, necessary lifestyle changes and the ideal way to implement them. Lifestyle changes could prevent one out of every three premature deaths related to heart disease, stroke, and chronic lung disease.13 “Eat better,” “Move more,” and “Smoke less” are just a few of the most common generic lifestyle recommendations. Though accurate, simply dispensing this advice is rarely sufficient in effecting change. So how can we set people up for success in each person’s unique context? Providing concrete, actionable steps based on their lived experience is the key. Living Health Lab takes the recommendation to eat better and prompts the individual to determine the specifics of what that looks like for them. These guided self-tracking strategies give structure to the process of watching, measuring, and investigating choices. Living Health Lab will show people how capable they are of taking control of their own health.
We hope to serve everyone from the student in a high school health class to the retiree trying to improve their heart health to the single parent struggling with their newborn’s skin sensitivities. Living Health Lab reaches those with medical diagnoses and extends to everyone who asks “How can I pursue a healthier life?” Some will ask that question on their own, while others will be advised by their doctor, nurse, or others on their care team. Living Health Lab can be an extension of those conversations as it leads people to explore their own health and seek answers.
As an Open Source Health Design project, Living Health Lab content will be available to the public for free use under the Creative Commons Attribution 4.0 International License. Transparency affords us the benefits of external input and engagement. By making all research, design, and ultimately code publicly available, we hope to spread good ideas and accelerate innovation for the public good.
We are in the early stages of design and funding will be a vital component for continuing this project. If you’re interested in contributing, partnering, sponsoring, or simply sharing feedback, please reach out to us at LivingHealthLab@goinvo.com.