How Making Health Data More Accessible Benefits Patients and Providers

Health Technology and Big Data

Participants of this year Health Datapalooza — a national conference focused on liberating health data — expressed what resonates with many of us in the wellness industry: there is substantial benefit for both patients and providers in making health data more widely accessible. However, there are many people who believe that limitless access to data is an evasion of privacy. There is inherent tension between the idea of unbound access to personal data for good and the potential it has to do harm.

Laura Green, who covered Datapalooza this year, writes that a comprehensive data sharing system has the potential to connect the sometimes incoherent American healthcare system, make all involved parties more proactive, save money and change communities for the better. According to a Pew Research Centre survey, in America, eight out of 10 Internet users look for health information online. Consumers are becoming so comfortable with Health 2.0 that tens of thousands of commercial health-related apps have been developed for digital mobile devices. It is not uncommon these days for health promoters to utilize the functionality of digital technologies to improve health outcomes. A simple example is the use of text messages to “push” information and nudge people to behave in a certain way.

Data collection for population health

Big Data is becoming an important source of information in the health and wellness industry.

We often argue that data can produce and increase knowledge and be used for the collective good by informing consumers and helping them understand the efficacy of health interventions in ways previously unattainable. Good examples are platforms such as HealthMap and PatientsLikeMe, which are free resources that encourage information sharing, connect people and help individuals look for solutions and ways to manage their health better.

Many of us associated with health technology believe large data sets contribute to general health promotion, health maintenance and disease prevention. Dr. Deborah Lupton, who is associated with the News & Media Research Center at the University of Canberra, takes a more critical approach. She explains that with so many people using social media sites, apps and digital platforms, there is massive potential for collecting data on people’s health and health-related behaviors, which also comes with possible privacy risks and ethical dilemmas.

Preventing online health surveillance

Recognizing Lupton’s viewpoint, an undeniable aspect of digital health technology is that it allows for the monitoring of individuals and populations by collecting detailed — often personal — information. When developing and promoting data sharing, we should not ignore the question of access and safeguarding. Before putting a particular system in place, it is important to understand and agree who can access the data and how this data is being safeguarded.

Lupton also argues that at times, encouragement to share information can become persuasion, and can even turn into coercion, particularly if financial rewards like lower insurance premiums are offered.

This makes the issue of consent more problematic, especially with people who might lack digital literacy.

Lupton also predicts that with all the available technology and development of digitized societies, we are not far from perpetually tracking people’s behaviors and sending this data to different organizations and corporations so they can use this information to reward or punish people rather than empower them. One thing most agree on is questions of consent and access remain open.

To combat these challenges and risks, the National Research Council launched a discussion on the complex issues of consent, confidentiality, patient access and the oversight of data.

Since a growing number of data are being collected on individuals, all these issues will need to be addressed and carefully monitored.