Personal Health Data Cooperatives

Personal Data Cooperatives – A New Data Governance Framework for Data Donation and Precision Health
The Ethics of Medical Data Donation

Given that personal data can be copied, individuals are entitled to copies of their data and individuals are the ultimate aggregators of all their personal data, citizens are elevated to new roles at the center of health research and a novel personal data economy. There, citizens, not some multinational company, control the use of and benefit from the intellectual and economic value of these data.

In a chapter of the book you'll find a description of MIDATA cooperative, a swiss case. My impression is that this is the appropriate approach. A closer initiative is SalusCoop. However, as happens in any public good, its governance is always the foremost issue.

Biotech boom 2018

Top drugs and companies

From NRD

From Nature NRD

Bioethics landscape

Medicine as a data science (6)

Adapting to Artificial Intelligence: Radiologists and Pathologists as Information Specialists

While some physicians are lobbying for creating more specialties, Jah and Topol argue exactly the opposite. Radiology, pathology and in vitro diagnostics should be under the same umbrella: "the information specialists":

Because pathology and radiology have a similar past and a common destiny,
perhaps these specialties should be mergedinto a single entity, the “information specialist,” whose responsibility will not be so much to extract information from images and histology but to manage the information extracted by artificial intelligence in the clinical context of the patient.

 There may be resistance to merging 2 distinct medical specialties, each of which has unique pedagogy, tradition, accreditation,and reimbursement.However, artificial intelligence will change these diagnostic fields. The merger is a natural fusion of human talent and artificial intelligence. United, radiologists and pathologists can thrive with the rise of artificial intelligence. 

The history of automation in the broader economy has a reassuring message. Jobs are not lost; rather, roles are redefined; humans are displaced to tasks needing a human element. Radiologists and pathologists need not fear artificial intelligence but rather must adapt incrementally to artificial intelligence, retaining their own services for cognitively challenging tasks.A unified discipline, information specialists would best be able to captain artificial intelligence and guide medical information to improve patient care.

You may agree or not. Technology is breaking barriers and creating bridges. Food for thought.

Josep Segú - Brooklyn Bridge

Exhibition at Sala Parés

The deep side of medicine and the gift of time

Deep Medicine

Nowadays the impact of Artificial Intelligence in Medicine is unknown. Every other day you may hear about robots and how they will replace humans. Nobody knows about it, distrust charlatans. The only thing that is real is what is already happening. Eric Topol has tried to do this in his new book Deep Medicine. But at the same time he considers that AI will let physicians humanise medicine, "the gift of time", and says:

"As machines get smarter, humans will need to evolve along a different path from machines and become more humane"

This may be Eric Topol's desire, nothing to add. My view is quite different. I'm not sure about the contribution of AI to a humanised medicine . This has to do with professionalism, not with AI. And the incentives for professionalism are plunging, while commercialism is on the rise. This is the key issue.
The remaining elements of the book are of interest to explain the current state of advances in apps and tools for clinical decision making. You'll find helpful information and a great summary of AI in medicine. However, my suggestion is that you can forget the subtitle of the book: "How artificial intelligence can make healthcare human again". It's naïve.

The Theranos contretemps as a serious scandal (2)

The DropoutPodcast by ABC Radio & ABC News Nightline

The inventor

Now you can hear the ABC radio podcast in 6 chapters on Theranos scandal. Report at The Verge. Highly recommended.

And the HBO new documentary explains all the details in 2 hours. The trailer:

#CRISPRWHO: notes on a new scandal

Open AccessOpen Access license

#CRISPRbabies: Notes on a Scandal

This week:

An advisory panel to the World Health Organization has called for the creation of a global registry to monitor gene-editing research in humans, the organization announced yesterday (March 19). The recommendations of the 18-person committee, which was established following news late last year that Chinese scientist He Jiankui had carried out human gene editing in secret, are aimed at improving transparency and responsibility in the field, the announcement says.

The panel’s advice did not go so far as to call for a moratorium on all human germline editing, unlike some other groups. Last week, a group of scientists and bioethicists from seven countries penned a commentary in Nature that argued for “a fixed period during which no clinical uses of germline editing whatsoever are allowed.” Such a moratorium would allow time for ethical and moral debate and for the agreement of an international regulatory framework, they wrote.

After the initial #CRISPRbabies scandal , we are facing a new one. The WHO pannel is asking for a registry instead of a moratorium. The battle has finished. Game over. From now on, the human being  will be affected from such decision. One of the worst decisions in the human history.