Patient-generated health data collected with wearable devices shows great promise as a complement to traditional, clinic-based data. How does this burgeoning flow of patient-generated data (PGD) fit into healthcare? How might patients and providers use it to collaborate on decisions that improve health outcomes?
While there are concerns about the validity and reliability of self-tracked data, researchers are already widely using wearable technologies in public health interventions and clinical trials. And these devices are rapidly growing in popularity among consumers: as of November 2017, there were more than 420 on the market.
The technology offers exciting new opportunities for “co-producing” health. “The role of the patient as an innovator has started to become part and parcel of solutions in healthcare,” says one health professional Reos Partners interviewed. “We have to look beyond the typical players, because at the moment patients are the most untapped resource in developing solutions in healthcare.”
At the same time, PGD (sometimes called PGHD, or patient-generated health data) presents complex medical and ethical questions and challenges. It’s not clear how all this data can be turned into useful information that actually improves clinical encounters and decision making.
In this project supported by the Robert Wood Johnson Foundation, we’re exploring these opportunities and challenges. First we conducted two dozen dialogue interviews with patients, healthcare providers, academics, technologists, service designers, and representatives of government institutions. Informed by those, each of four innovation teams then developed a detailed “use case” that will guide others in using PGD to create richer, more collaborative clinical encounters and better health outcomes.
One thing that’s already clear: health care providers want technology to enhance, not subsume, their relationships with their patients. As one provider says, “Doctors and patients are so estranged from each other. Medicine and humanity are about conversation. If we are going to start collecting data, we need to talk more and listen more, and the data we collect should enable these conversations.”
This project is conceived and supported by the Robert Wood Johnson Foundation, the United States’ largest philanthropy dedicated solely to health. The foundation is focused on building a national “culture of health” that looks beyond the healthcare system to the wide range of powerful personal, cultural, and socioeconomic factors that influence health.
The four participating innovation teams:
- Northwestern University and Rush University Medical Center
- Nonprofit research institute RTI International and the University of North Carolina at Chapel Hill
- University of Washington
- Propeller Health
As we described above, patient-generated data has tremendous promise as a medical intervention, but it also presents an array of complex medical, cultural, and ethical questions and challenges. Here are the primary challenges that surfaced in our dialogue interviews and subsequent innovation workshops.
A Shift Toward Trust
Many providers are not open to PGD because they don’t trust that it’s been collected in a rigorous way. Before PGD can enable collaborative decision making between patients and their care team, it must be viewed as valid and reliable.
- How might we increase clinicians’ receptivity to using PGD in the clinical encounter?
- How might we find the balance between PGD and clinically generated data?
- How might we establish rigor within the context of PGD?
Identify Mechanisms for Meaningful Collaboration Between Patient and Provider
Both patients and providers need help with making sense of and using PGD if it is to enable meaningful communication and collaboration — and in turn, health and well-being.
- How might we translate large amounts of data into comprehensible and relevant information that can be readily used by patients and providers?
- How might we improve the quality of data-driven conversations between patients and their care team?
- How might we use PGD to include patients’ experiences in decisions about care and treatment plans?
Bring Patient Stories into the Clinical Encounter
If patients’ day-to-day lived experiences constitute important and reliable data, these experiences must be brought into the clinical encounter and used to inform healthcare options.
- How might we track behaviors that promote wellness and well-being?
- How might we track and synthesize qualitative data that enables patients to tell their whole story?
- How can the burden of recording large amounts of data be reduced?
To begin exploring all that PGD could do to improve health outcomes, our innovation teams focused on the three challenges described above and have produced four use cases for wide dissemination.
Use-case methodology originated as a narrative discovery process for designing computer software. What does the software need to be able to do in order for the user to achieve their goal? What problems might they encounter along the way? The use case documents the user’s interaction with the system; it doesn’t design it. For this project, we’ve adapted use-case methodology to explore a social system.
Each use case A) articulates a specific goal for how PGD can be used to improve health outcomes, B) describes who needs to be involved, and C) documents the sequence of steps necessary to achieve that goal. Rather than try to achieve a “right answer” at this stage, we’re articulating what we know.
For patient groups, clinicians, and other stakeholders in healthcare, these four use cases will serve as guides to using PGD to enable richer, more collaborative clinical encounters and better health outcomes.
Integrating Wearable Device Data into Mental Health Care for Veterans
By Northwestern University and Rush University Medical Center
Researchers created recommendations for ways to integrate Fitbit devices into a mental health treatment program for veterans living with post-traumatic stress disorder (PTSD). This team speculates how providers might be trained to use patient-generated data to provide physiological insights that could be used as a point for reflection and conversation with patients.
Standardizing and Evaluating Consumer Wearable Device Measurement
By RTI International and the University of North Carolina at Chapel Hill
By analyzing the broad use of wearable technology in health studies, researchers established an evidence-based protocol to evaluate the reliability and validity of these devices. This framework is designed to evolve and scale as patient-generated data technology expands and improves.
Mobile Apps for Generating and Sharing Food-Related Data
By University of Washington
To help patients identify opportunities for healthy change within their diet, researchers developed a suite of mobile phone applications that empower users to monitor symptoms and form hypotheses about what might be affecting them. Foodprint is a photo-based diary app that captures visual records of what the patient is eating as well as their notes detailing the effects of altering their diet. TummyTrials is a mobile app that structures low-impact diet experiments that the user can explore on their own to better understand what elements of their diet might be triggering undesirable symptoms. These apps help the patient make more informed food choices and improve communication between the patient and their health provider.
Using Patient-Generated Data Reports to Individualize Care for COPD
By Propeller Health
Using an inhaler sensor that pairs with a mobile app, researchers created a platform to collect and reflect data about inhaler usage from patients living with chronic obstructive pulmonary disease (COPD). For this use case suite, the patient-generated data is translated into reports to be used by patients to help self-manage their care as well as by physicians to help improve their methods for creating individualized treatment plans for their patients.
The impact of a co-design approach
I’ve realized the importance and possibility of taking more of a co-design approach to my work with patients and providers.
Surfacing actionable insights
Working with the use-case methodology helped me realize both unintended and unidentified steps in our approach for using PGD in a clinical encounter.
A better appreciation for the perspective of the patient
I now have a better appreciation for the perspective of the patient and their involvement and value in the exchange and collection of PGD.
Reducing the number of clinical encounters
If we start to increase the use of PGD, return it to patients quickly, and provide them with tools that let them make decisions with it, then we might actually reduce the number of encounters that they’ll have with clinicians, which are the things we can feel positive about in the healthcare system.