I first put a fitbit, a digital pedometer that tracks steps, calories burned, food intake, and other personal analytics data, on my wrist back in October. After some results from routine tests during my annual physical, my doctor informed me that my cholesterol was high. “Start exercising more and stop eating bacon cheese burgers ” were the doctor’s orders and we’ll retest in 6 months. Otherwise, I would need to go on statins.
As a data nerd, I couldn’t resist the fitbit and its ability to track my every move during this glorious science experiment. After six months of monitoring my personal health analytics and making better decisions, I’m happy to report that my cholesterol is in the normal range and a side benefit of loosing 20 pounds. I also started living the fitbit life, especially around finding ways to incorporate walking into my work – at client meetings, trainings, and even keynotes.
Many people are embracing wearable devices and apps that monitor their health and use it to improve their health. In a recent article in the MIT Technology Review about mobile health care data, making this data actionable can be life saving for the patient.
“Data is changing the role of patients, offering them a chance to play a more central part in their own care. One way is by using mobile technology to monitor sleep patterns, heart rate, activity levels, and so on. In development are even more advanced devices capable of continuously monitoring such key metrics as blood oxygen, glucose levels, and even stress. And companies like Apple are hoping to become repositories for all this information, giving consumers new ways to track and perhaps improve their health.”
Is there the potential for greater good from aggregating and analyzing our collective fitbit and other personal health data? Are there other benefits? What are the challenges?
These are the questions discussed during the Health Datapalooza conference in Washington, D.C. last month. According to Information Week, the Health Data Exploration Project, California Institute for Telecommunications and Information Technology (Calit2), announced it was forming a network of academics, scientists, and health IT companies interested in figuring out the logistical, practical, and ethical issues related to mining consumer health data to spot public health trends.
The project published the Personal Data for the Public Good and has recently received funding from the Robert Wood Johnson Foundation to explore the issues identified in the report. They are defining health-related data as the data being collected by wearable devices and smartphone apps as well as ambient social data as people communicate on social networks and leave digital footprints related to personal health tracking, monitoring, and decision-making.
As the report points out, “personal health data” falls into a bermuda triangle as it is currently mostly outside of the mainstream of traditional health care, public health or health research. Medical, behavioral, social and public health research still largely rely on traditional sources of health data such as those collected in clinical trials, sifting through electronic medical records, or conducting periodic surveys.
The initial survey and interviews found the following:
- Individuals were very willing to share their self-tracking data for research, in particular if they knew the data would advance knowledge in the fields related to PHD such as public health, health care, computer science and social and behavioral science. Most expressed an explicit desire to have their information shared anonymously and we discovered a wide range of thoughts and concerns regarding thoughts over privacy.
- There is a great deal of experimentation taking place. For example, SmallStepsLab serves as an intermediary between Fitbit, a data rich company, and academic researchers via a “preferred status” API held by the company. Researchers pay SmallStepsLab for this access as well as other enhancements that they might want.
- There are clearly some obstacles around privacy and access. The report pointed out these:
- Privacy and Data Ownership: Among individuals surveyed, the dominant condition (57%) for making their PHD available for research was an assurance of privacy for their data, and over 90% of respondents said that it was important that the data be anonymous. Further, while some didn’t care who owned the data they generate, a clear majority wanted to own or at least share owner- ship of the data with the company that collected it.
- InformedConsent:Researchers are concerned about the privacy of PHD as well as respecting the rights of those who provide it. For most of our researchers, this came down to a straightforward question of whether there is informed consent. Our research found that current methods of informed consent are challenged by the ways PHD are being used and reused in research. A variety of new approaches to informed consent are being evaluated and this area is ripe for guidance to assure optimal outcomes for all stakeholders.
- Data Sharing and Access: Among individuals, there is growing interest in, as well as willingness and opportunity to, share personal health data with others. People now share these data with others with similar medical conditions in online groups like PatientsLikeMe or Crohnology, with the intention to learn as much as possible about mutual health concerns. Looking across our data, we find that individuals’ willingness to share is dependent on what data is shared, how the data will be used, who will have access to the data and when, what regulations and legal protections are in place, and the level of compensation or benefit (both personal and public).
- Data Quality: Researchers highlighted concerns about the validity of PHD and lack of standardization of devices. While some of this may be addressed as the consumer health device, apps and services market matures, reaching the optimal outcome for researchers might benefit from strategic engagement of important stakeholder groups.
There are more and more people like me who are tracking their health on their smartphone or on social networks and a growing number of wearable devices that can track data. There are many more on the horizon, for example, even a digital plate that count your calorie intake. The report identifies a lot of interest from individuals and researchers to make use of this data. However, privacy, balancing open science with intellectual data, and other issues need to be addressed before personal health data can be maximized for public good.
While social media and social networks were the first wave of connectedness, we are now entering what Geoff Livingston describes as a “post social era.” This is a world where everything will be connected and generate data, even cows will tweet. We’re just beginning to look at the implications for the social good sector.
Are you tracking your health with a health app? Would you be willing to share your personal health information with researchers?