As a clinician, technology is a significant interest in my life. I have always felt that one way in which to stay young is to embrace technology, and to understand how technology integrates into our professional and personal lives.
This past April, I was intrigued by the announcement of ResearchKit by Apple.. The first research apps developed covered five areas of study: Asthma, breast cancer, cardiovascular disease, diabetes, and Parkinson’s disease. However, the number of commercial and institutional research organizations using the open-source platform of ResearchKit is expanding daily.
More than 75,000 people have enrolled in ongoing health studies using ResearchKit apps to gather health data. Smartphones and wearable technology, with their microphones, cameras, motion sensors, and GPS devices, have unique advantages for gathering health data, and, in some cases, can serve as a valuable addition to regular care from a provider.
The possibilities for benefiting the body of health knowledge are endless. However, it is important for patients to be mindful and use these tools wisely in this modern world of connectivity.
More than a few people are commenting on the possible risks of gathering data in this way. As always in our modern society, available technology is way ahead of regulations. For example, we have strong laws and regulations regarding patient confidentiality enshrined in medical tradition and HIPAA.
Recognizing this vulnerability, Apple added the following to their app store submission guidelines: “All studies conducted via ResearchKit must obtain prior approval from an independent ethics review board.” Meaning, all studies must obtain Institutional Review Baords (IRB) approval. This is a good step in the right direction, but much more care is needed to gather data with the expanding number of ResearchKit apps, to ensure that personal health data is protected and that this technology is used in an ethical, and lawful, way.
Regardless of the all the caveats, I remain intrigued and hopeful that leveraging technology via tools such as smartphones and software like ResearchKit will be a great boon to the understanding of disease and treatments around the world.
I would recommend the following to put us ahead of the curve with these new tools:
- Ethical guidelines and procedures need to be developed by the research community in the U.S. to ensure that use of technology in research data gathering is done with the greatest protection of the patients’ individual health data.
- Laws and regulations need to be considered to ensure the integrity of the data as well as the protection of personal health information.
- Companies like Apple, who are leading the roll out of this technology, should not wait for state and federal governmental entities to regulate the use of technology in research and should be leaders in the ethical, responsible use of apps to gather and use health research data.
Technology in medicine is constantly evolving. We have to try to evolve with it, however, and recognize that the law of unintended consequences is always present, and will always present challenges as the vast universe of technology expands with every increasing speed in medicine and every other area of life.