Digital health has been around for a little over a decade, meaning it is one of the newest—and arguably hottest—emerging trends in healthcare. But like any new industry it is working out the ethics.
Last week Stanford Libraries released a statement of guiding principals for digital health. The document was created based on input from 30 participants from across disciplines including the former surgeon general, executives from Otsuka Pharmaceuticals, Proteus, and Kaiser Permanente, and academics from UC Berkeley and Stanford.
“The Guiding Principles on Ethics in Digital Health is a positive step towards ensuring organizations take seriously their duty to care for personal data and do no harm,” Dr. Regina Benjamin, former Surgeon General and Proteus Board Member, said in a statement. “It is also very valuable to set expectations for patients, so they are aware of the potential risks of using a digital health product.”
The ten guiding principals include:
- The technology should always work in the patient’s best interest.
- Sharing health information should always be to improve patients' outcomes.
- The “Do no harm” principal should be used in regards to the use and sharing of health information.
- The patient shouldn’t be forced to use the digital products against their wishes.
- The patient should be in control of their data and decide when it gets used.
- The digital health information provided should be accurate.
- Health information should be protected with strong security tools.
- Whenever there is a security violation it should be reported quickly as well as what is doing to fix the problem.
- The technology should enable patients to have more connection to their caregivers.
- Patients should be engaged in shaping digital health products.
Why it matters
The relatively new industry is still ironing out the ethical questions. These guidelines are one of the first major collaborative efforts to give emerging developers, and industry professionals an outline for creating and administering new health tech products.
Different subsectors of the digital health space are also engaged in conversations about ethics and best practices. For instance, in August a group of consumer genetic and personal genomic testing companies released a set of best practices for handling consumer’s personal genetic data.
It’s been a conversation on the other side of the Atlantic too. The UK government started the Centre for Data Ethics and Innovation, dedicated to bringing together advisors from academia and and industry to help guide ethical and innovative uses of data.
But as some in the industry are pointing out where there is a lot of potential, there is also danger.
“These new technologies hold great promise, but with these new technologies comes the responsibility of imagining unintended consequences. And in 2018, we are not short of stories to tell,” Sara Holoubek, CEO of business and tech consultancy Luminary Labs, said during a talk in September on health innovation ethics held at Massachusetts General Hospital. “People have been thinking about the unintended consequences of technology for a long time. They just don’t live in Silicon Valley.”