Noteworthy Information
Data Stewards Network: A Call for Action  show on Slack
teemu.ropponen  

Toward building the data infrastructure and ecosystem we need to tackle pandemics and other dynamic societal and environmental threats.

Save our NHS  show on Slack
Wip  

What is your personal connection with your healthcare service & the professionals that work within it?

EU Funding for Innovative solutions to tackle Coronavirus outbreak  show on Slack
teemu.ropponen  

The European Commission is calling for startups and SMEs to apply urgently to the next round of funding from the European Innovation Council

Controlling coronavirus with apps  show on Slack
Iain  

Smartphone tracking of the pandemic - a help or a threat to privacy?

MyData Webinar #6: Interoperability of Health Data  show on Slack
Sille  

The MyData webinar about Interoperability of Health Data (presented by Paul Knowles and Erwan Médy) moderated bei Ansku Tuomainen is now up at https://mydata.org/webinars and in MyData Global’s Youtube channel.

HHS publishes final regs on info blocking, interoperability  show on Slack
Isabelle de Zegher  

The U.S. Department of Health and Human Services has finalized two long-awaited sets of rules that will govern how providers, payers and technology vendors must design their systems to give patients safe and secure access to their digital health data.

The Open Patient (Video: 15:50min)  show on Slack
madprime  

What happens when two brain cancer patients decide to take their futures into their own hands?

How to Make 10 Million Discoveries  show on Slack
madprime  

Quantified Self co-founder Gary Wolf’s call for empowering individuals to study themselves with “everyday science”.

A Preliminary Opinion on data protection and scientific research  show on Slack
Joss  

A statement from the European Data Protection Supervisor (lead by Wojciech Wiewiorówski) about personal data protection and scientific research.

Bankrupt startup uBiome auctioned for 1% of its original valuation  show on Slack
madprime  

What happens to personal data acquired during bankruptcy? My impression is that it's a mess, for all startup bankruptcies (not just this one). Firms that handle bankruptcies aren't remotely familiar with the tech, they don't know the difference between digital assets and office furniture.
I could speculate about security concerns, especially when assets are sold internationally... (and I've never seen anyone worried about this, which baffles me?)... the reality is probably the data almost always goes stale, becomes unreadable, and gets lost/forgotten.

Checklist for safe and responsible digital health research  show on Slack
madprime  

My colleague Camille Nebeker at UCSD specializes in ethics with digital health – she's developed a checklist for “safe and responsible digital health research” - it's private but you can request a copy.

A glitch in diabetes monitors serves as a cautionary tale for health tech  show on Slack
madprime  

Here’s the challenge for technology in health care: Success means that new tech also becomes too indispensable to fail. You can deal with Twitter being down, but not the loss of a device that keeps your kid’s blood sugar at safe levels.

The Open Food Repo  show on Slack
madprime  

The Open Food Repo is a freely and openly accessible database of barcoded food products sold in Switzerland. It is run by the Digital Epidemiology Lab at EPFL.

Why Google’s Move into Patient Information Is a Big Deal  show on Slack
moira  

We are obviously at the beginning of what will likely be a long, contentious, and vital debate over how to manage personal health information in the digital age... patients have an undeniable right to privacy and control over their personal health data.

Finland Leads The Way In The Secondary Use Of Health And Social Care Data (Podcast: 5:19min)  show on Slack
John W.  

Medical data are considered particularly sensitive personal information. Laws and regulations in most countries, including the USA and throughout Europe, generally aim to restrict sharing such information with the target of building privacy walls around each person’s data. But making such health data available more broadly is key to improved medical care, research and the advance of health science. Finland is the first country known to have adopted an approach to allow third parties to access health data for the purposes of scientific research, drug and health technology development and knowledge-based management in social and health care.

Are politicians actually delivering? (Infographic)  show on Slack
Dan Bayley  

Digi.me was running a Twitter chat on the history of health record access using the hashtag #HealthRecordAccess. The infographic shows statements from UK politicians in the last 30 years.

Medical Data Exchange  show on Slack
Alessandro_C  

The first open healthcare protocol for the secure and private exchange of medical data.

How top health websites are sharing sensitive data with advertisers  show on Slack
Paul-Olivier Dehaye  

Financial Times investigation reveals symptoms and drug names shared with hundreds of third parties including Google and Facebook.

Google to Buy Fitbit for $2.1 Billion  show on Slack
Sarah  

The deal represents an aggressive attempt by Google to bolster its lineup of hardware products.

Taxonomy of Definitions for the Health Data Ecosystem  show on Slack
Alessandro_C  

The Future of Privacy Forum (FPF) and the Information Accountability Foundation (IAF) partnered with the goal to create a framework to enable a better understanding of the current state of the health data ecosystem in one common language and to anticipate where it is heading.

Blueprint on Digital Transformation of Health and Care for the Ageing Society  show on Slack
Alessandro_C  

The Blueprint has focused on the identification of heath and care needs of the population using a “personas” approach. Twelve personas have been developed, representing different “population segments” with different conditions and needs.

The First Amendment Right to Speak About the Human Genome  show on Slack
madprime  

No doubt unintentionally, the debate about return of results has taken on a striking resemblance to the 1520–1547 debate about translation of the English vernacular Bible. (Very US law but the section on the Bible is great.)


Questions Asked
MyData in the Time of Coronavirus  show on Slack
Iain  

Is there a story to be told about how MyData type capabilities would help in the situation we find ourselves with Coronavirus? I'm not suggesting an immediate source of help; my question is more generic about downstream similar outbreaks and alternate medical emergencies. It seems to me that the current model can only be top down, and thus finding current and future victims is like finding a needle in a haystack. With strong identity and data management capabilities on the side of the individual then individuals could self-assert positive or negative claims, verified where possible and there would therefore be a solid bottom up source of data to help the top down flow. And then of course there could be new methods of analysis and prediction driven by MyData data flows over time. Thoughts from the group?

Contribute to Article in 'Medical Writing'  show on Slack
Sille  

Some time ago we got a request for writing an article about MyData and its goals, with the connection to health data. The article is for the June 2020 issue of Medical Writing which is the official journal of the European Medical Writers Association. The journal is peer-reviewed and open access. There are no charges or any other hidden fees. Authors retain copyright.


Tools
Ciitizen
Paul-Olivier Dehaye

A startup that “helps you collect, summarize, and share your medical records digitally”, focusing on cancer patients. Just be aware that one investor is Google/Alphabet’s Verily which says it “develops tools and devices to collect, organize and activate health data”.

My Health My Data
teemu.ropponen

Digi.me is involbed in My Health My Data.