Privacy, transparency and consent

Back to School Part 2: Ensuring patients control their own data is the first tenet of the rules of the digital road

PART 1

Rules of the Road

PART 2

Privacy, transparency and consent

PART 3

Criteria of demarcation

PART 4

Rethinking first principles

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Patients need to control the use of their data. This calls for new policies on transparency and consent, and means establishing systems governing the ownership, collection and agency of those data.

Data privacy is probably the biggest flash point of the digital age. Who owns the data is only part of the issue -- who controls it is key.

Privacy concerns cross digital therapeutics, biomarkers and tools for disease management, all of which involve the use of patient data to either create or improve products.

Biopharma companies may contend they should own the collective data set when they fund large trials and gather the data, in addition to the algorithms or other products of value derived from the data.

Even so, this does not give them license to open-ended use of the data for any purpose.

Moreover, there can be no automatic claim to unlimited ownership of data in the real-world settings where infinite data points will be generated on a rolling basis.

Many of these technologies will move the collection of data from the clinic to the home, capturing a mix of old and new measures, such as resting heart rate, blood pressure, HbA1c and patient-reported quality-of-life measures. Often, they will see the convergence of consumer tech and digital health, incorporating fitness trackers and other wearable sensors into treatment solutions.

Consenting to share

Patients should not be required to relinquish control of their information

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