As the US Congress considers another major round of healthcare reform, it’s interesting to note that the latest bill which is purportedly “laying the ground work for a 21st century healthcare system” makes no mention of patient data or patient privacy. Regardless of politics, it’s clear that patient data is going to play an increasingly important role throughout the modern healthcare system – impacting both patients and providers. Earlier this year, Transcend Insights, a population health management company run by Humana, conducted a survey of more than 2,000 patients, asking them about their use of digital technologies and use of mobile tracking devices. Consistent with trends over the last few years, patient use of medical tracking devices remains strong with 64% of patient reporting the use of some type of device.
In terms of patient data, this survey found that an incredible 97% of patients believe that it is important for any health institution to have full access to their medical records. Additionally, 93% believed that sharing of their medical information was among the most important factors to receiving personalized care. This new research seems to directly contradict a 2016 survey by Black Book of 12,000 patients in which 87% of patients were hesitant to divulge their health data with multiple institutions.
The Paradox of Patient Privacy
So – do patients want everyone to have access to their health data in order to receive the best care possible, or do they want to keep their data relatively private, concerned about the repercussions of having their personal information available to a range of unknown institutions and individuals? While we don’t have access firsthand access to the survey methodologies used in these two studies, it’s safe to assume that the framing of the particular questions had an impact on how patients answered questions surrounding data privacy. In many ways though, these two surveys highlight the paradox of concerns in an era of expanding digital health records and increasingly powerful digital health devices that generate copious amounts of patient-generated health data (PGHD) :
Patients naturally want the best possible care and assume transparent sharing of their patient record across multiple caregivers will help deliver better care – but at the same time patients want their privacy protected and are hesitant to have multiple players accessing that information without their knowledge.
Moving forward, there are no easy answers to resolving this paradox. Kate Gorski, director of communications for Patient Privacy Rights, notes that “Many people simply don’t know who has access to their health information and how they are using it. We tend to think it is only used by our physicians, pharmacists, and insurance companies. But because all of that data is also bought and sold, we often have no way of knowing how our medical information is impacting other facets of our lives, from employment to insurance, and even mortgages.”
Patient ownership of health data is an issue that has for the most part remained under the radar during the past decade of healthcare reform – but is going to increasingly draw attention as insurers and other for profit companies recognize the inherent power and potential profit potential of amassing patient data, while patients themselves begin to recognize that the data collected by their devices is not automatically going to be used for their own benefit. As of 2015 – the ownership of patient data was determined on a state by state basis, New Hampshire being the only state to explicitly give ownership to patients, while more than 20 other states cede ownership of that information to the healthcare institutions that gather the data.
Blockchain to the Rescue?
Looking ahead, there is growing interest in using blockchain technologies to address some of these concerns. Brian Behlendorf, executive director of a blockchain consortium called Hyperledger, attended HIMSS 17, where the organization had a presence in the Innovation Zone of the show.
Behlendorf explained the potential blockchain technology has for helping to solve the paradox of patient data, “There’s an opportunity to capture the holy grail of health IT, which is to put the patient back in the center of their care. We can provide much more transparency balanced against confidentiality… With blockchain technology you can set different sharing parameters for different types of data. Something like someone’s blood type might be shared with every organization, so that when that patient shows up unconscious while they’re on vacation at some hospital they don’t have a previous relationship with, they can receive the emergency care they need. But something like HIV status – you might not even want the network to know that there was an HIV test performed, let alone post the result in clear text to every member of the chain. The patient can play a role in defining when certain elements get shared and how widely that sharing goes.”
It remains to be seen to what degree patient-generated health data will be integrated into broader patient records, and who will control and ultimately own all of this data. However, one thing is for sure – there will be more patient data than ever before, and it will have a growing impact on all aspects the patient journey. Hopefully all of this data will ultimately result in better patient outcomes, while helping to lower the escalating healthcare cost curve.