Despite the prevalence of consumer data collection and analysis today, there remains a glaring lack of clear policies and legislation around the protection of that data, according to privacy experts at a recent public forum on the topic at MIT in Boston. This gap poses great potential risks not just to consumers and their privacy and safety, but also to industries like the high-tech, financial and healthcare sectors that rely on consumer trust to thrive and innovate, experts said at the forum hosted by the Office of the Massachusetts Attorney General.
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Panelist and Twine Health CEO John Moore said that even in the heavily regulated healthcare industry, where legislations such as HIPAA and HITECH place restrictions on how organizations use patient data and heavily favor patients’ right to access their data, there are still considerable risks to customers.
In order to retain patients in their network and churn office visits, the powers that be at many of these healthcare organizations often use these regulations as “an excuse to withhold data from patients even though it was designed to make it accessible to them,” he said.
If the system continues restrict this access, it could be detrimental when, in the near future, the majority of patient data will be stored on mobile medical devices (e.g., blood glucose device) that will be able to produce, in real time, the results currently produced by hospital or office labs.
“Patients haven’t seen and experienced yet where sharing data provides value to them — as soon as you provide them an experience that helps them solve problems in their health and in their life, they exhibit drastically different behaviors,” Moore said.
Twine Health attempts to buck this trend by enabling patients to manage chronic disease by keeping track of personalized goals via a synchronized cloud-based app.
A patient with high blood pressure, for example, has an atypical healthcare experience when using the Twine Health app. While the condition is still treated like an acute disease, a patient using Twine Health won’t interact with a physician prescribing medication. Instead they encounter a health coach who acts as a bridge to the doctor and collaborates with the patient to assess motivations and life barriers. The coaches also help create actionable goals, such as bringing blood pressure down by 10 points.
“All of this shows up in a patient’s data hub. … When a patient leaves the office, they start communicating with that health coach on a daily basis on medication, diet, exercise, etc.,” Moore said.
Patients using Twine Health are experiencing a dramatic decrease in their blood pressure compared with the average patient, Moore said: 70% reach their target blood pressure within one month; while the normal rate is 30% of patients reaching their goal within a year.
This approach, Moore said, “instills great sense of trust and affects customers’ behavior and what kind of data they want to share.”