Delivering care in the new virtual world…
On Transparency and Trust – I recently read an interesting article (“Plain language about health data is essential for transparency and trust” – October 9, 2019 6:35 PM EDT) published in one of my daily newsletters, The Conversation. The article cuts to the very heart of a critical question we are facing in health care – transparency and trust. While the focus was on the general considerations related to transparency and trust, health care is a prime example where we need to do a better job. The full article is available in the International Journal of Population Data Science, where a plan is outlined for working with the public to simplify communications about health data.
Specifically, the article outlined the Five Safes framework and released by the Wellcome Trust, a U.K. based charitable health research foundation in its One-Way Mirror Report. The focus of the report was on what the public believes are crucial considerations about how health data is used by companies. While all of my health care colleagues should read the full article, the essence of the framework for sensibly managing health data is as follows:
- Safe Projects: Is there scientific merit? Is there public value?
- Safe People: Who is using the data? What training do they have?
- Safe Data: How potentially identifiable are the data? Is there consent? Is there legal authority for use?
- Safe Settings: Where will be the data be analyzed? How will they be managed?
- Safe Outputs: Is there any potential disclosure, either of individuals, families or communities?
These critical questions are where we in the health care industry need to focus our time and energy as it relates to personal health information (PHI). Laying out the framework for our policies on these crucial Who? What? Where? When? How and Why? questions will move us forward in some very positive directions. Finally, the article also pointed us in the right direction by highlighting the work that has been done in Canada [Digital Charter]and the U.K. [General Data Protection Regulation]. Consider it…
Delivering care in the new virtual world…
Just Because!! Mis-Directed Messing With Our Genome – Last November when the announcement was made by the Chinese researcher He Jiankui, many of were shocked and dismayed. Without oversight and any kind of apparent debate, he unilaterally altered the genome of two babies. Using the CRISPR-Cas9 technique, he snipped portions of their DNA to make changes in their genome to lower the babies' risk of contracting HIV. While that was troubling enough to create a worldwide debate, now we learn that the intervention may have shortened the babies’ lifespans. The journal, Nature Medicine, reports that researchers analyzed a U.K. genetic database and found that when people naturally have a trait similar to the one that he engineered into the babies' DNA, they have about a 21% greater risk of dying before the age of 76 than people who don't have this trait. So, I refer you back to the first quote of the day from Wired Magazine where Robert Weber is quoted, “In medicine, just because something can be done doesn’t mean it should be done.” Good words of advice to follow – always!!
Lessons From Automotive For Health Care – There are no direct correlations with what follows but there are definitely lessons to be extrapolated. For years, the automotive industry has hung on “the driving experience” as a way of marketing their products for the public. But, as we move toward driverless cars and other technology interventions which are dramatically altering the notion of who drives, when and how - the question of traditional relevance comes to the forefront. When safety, comfort, ease of use and other attributes come to the front of the line, getting behind a wheel, driving for hours to get somewhere in stop and go traffic and learning the ins and outs of fellow drivers’ patterns becomes far less attractive. So, it will be for health care. We’re probably not as far along with technology interventions in health care but the interventions, once made, will likely be even more dramatic. We need to rethink out our industry from the inside out! Are we accepting the right kinds of people into medical school? Into the health sciences, in general? What is a better way of managing chronic problems? When should we intervene? And, how? What outcomes should we expect? How can we empower the individual? What cost factors can be extracted that show no value in the care delivery environment? These and other questions like them need to come to the front. You see, the issues of “safety, comfort, ease of use and other attributes” will just as surely roll over the traditions of the health care industry as they have for automotive. Consider it. Read this article by an automotive expert as he explores new ideas on the future of an industry and consider how they apply to health care.