Exploring a Culture of Health: Navigating the Path Towards Responsible Personal Health Data Research
This post is part of Exploring a Culture of Health, a citizen science series brought to you by Discover Magazine, SciStarter and the Robert Wood Johnson Foundation, serving as an ally to help Americans work together to build a national Culture of Health that enables everyone to lead healthier lives now and for generations to come.
With the advent of health-related wearable devices and apps, more and more individuals are actively tracking their personal health. In addition to physiological measurements like heart rate or blood pressure, these tools also enable individuals to record and analyze their behavior such as physical activity, diet and sleep. (See image below). Individuals are able to build reliable records of their personal health data with day-to-day resolution. Now, researchers are interested in using this data to better inform health research.
“Personal health data research has the potential to provide a more holistic and inclusive description of an individual’s and a population’s health profile. Personal health data research will not replace traditional data and research methodologies but rather complement and enrich it, providing researchers with a deeper understanding of what contributes to health,” says Dr. Kevin Patrick principal investigator for Health Data Exploration, a project exploring how to use PDH in research that is responsible, ethical and meaningful.
But research using personal health data is not without its obstacles.
“Personal health data comes with its own set of complications, requiring new rules and guidelines for research. There are a lot of very legitimate concerns. We need to be very cautious and aware of how we handle this type of data,” says Patrick.
The mission of the Health Data Exploration is to understand and address these challenges. The project is building a network of representatives for the various personal health data stakeholders. This includes the individuals who generate the data, the researchers or public health officers who want to access it, and the companies that broker the data.
“We see this project and those involved as map makers. We are trying to chart the landscape of this new space and smooth the roads between the different stakeholders,” explains Dr. Matt Bietz, co-investigator of the Health Data Exploration project.
This past fall, the Health Data Exploration project surveyed these stakeholders to being scoping out this landscape.
Not surprisingly privacy was a big concern.
“Among individuals who track their personal health data, many are open to anonymously donating their information for health-related research. However we learned that the question of what constitutes sufficient privacy is contextual and very personal. We will need a nuanced way to address the issue of privacy and informed consent,” says Bietz.
Another question that arose was data ownership and the potential complication of sharing data managed by private companies.
“Certain companies are interested in working with personal health data research and sharing their data. For some it helps them understand the needs and wants of their consumers. For others it speaks to their interest in promoting public good. Many of these health-related companies were started by individuals interested in public health and public good. But these are private companies. Their owners still need to consider the company’s interests,” explains Bietz. The full report on the survey can be accessed on the project website.
Data analysis will require some rethinking as well. Traditional health research is controlled, specific and very focused. By contrast, personal health data is real time data, highly variable, without experimental controls or organized sampling. “Analyzing this type of ‘big data’ will require new statistical approaches, drawing from the fields of computer science, atmospheric science and engineering,” says Patrick
There is also the issue of self-selection – not everyone has access to or is interested in using personal health data tracking technology. But as mobile phone technology becomes more accessible and if datasets are made open and can be pooled, sampling even in underrepresented populations should be feasible.
The Health Data Exploration network is organized by the California Institute for Telecommunications and Information Technology and supported by the Robert Wood Johnson Foundation (RWJF). RWJF program officer Steve Downs explains the foundation’s interest in this project. “We want people to consider health an integral part of their day-to-day life. We think pursuing personal health data research has tremendous potential to open a new window into the role of daily behavior on health. Long term we hope people will see the value of their data to help health research and understand how such research will provide insights into their own health.”
How do you think personal health data can provide insights into health? What would make you more willing or less willing to share your own data? What concerns or suggestions do you have? Leave a comment below.
Interested in other participating in personal health related projects? Check out the projects below which are part of a database of more than 800 citizen science projects created and managed by SciStarter, an online citizen science hotspot.
Help researchers understand how diet affects the microbes that live on our bodies. Make a donation and receive a microbe kit which you can use to sample yourself or others, including your pet. Mail the kit back and get a report detailing the microbes on your body.
Mapping the A, T, C, G’s of the human genome is just the start. This global project asks individuals to donate their genomic, trait and health data so scientists can build an open access database to study the genome, genome-environment interactions and the link between genetics and other aspects of the human experience. Participants must be at least 21 years old and willing to share data in a public platform.