The European Connected Health Alliance (ECHAlliance) has just launched the "Ukraine Health Connector" to promote actions related to digital health that support Ukraine, Ukrainian companies and/or Ukrainian refugees. Here is the statement from Brian O'Connor, ECHAlliance's chair, about the initiative.

How anti-science movements use the language of personal liberty and how we can address it. Looking back, the initial spread of COVID-19 in early 2020 illustrates that clinicians, epidemiologists and behavioral scientists around the world greatly underestimated the scope and intensity of resistance to mitigation measures that would follow. Many in the medical community have remained wedded to the view that direct observation of the soaring volume of death and morbidity associated with coronavirus infections will convert most people into adherents of mitigation measures. Hence, most public health communications on mask-wearing, social distancing, and vaccination stubbornly focus on and attempt to leverage efficacy data, patient testimonies, and the clout of clinicians, politicians, athletes and social media influencers, to increase public uptake.

Freedoms are most intimately and persistently felt as, and equated with, human rights. However, without strategic integration, freedom becomes an individualistic paradigm focused on personal gain, disengaged from collectivist public health efforts. The embrace of mitigation should be promoted as an expression of freedom and support of human rights, a communal paradigm focused on maintaining personal health and dignity.

A PhD thesis on (health) data ownership: It can be stated that digital information is irremovable part of modern healthcare. However, the legal ownership of patient information lacks a coherent and justified basis. The whole issue itself is actually bypassed by controlling patient information with different laws and regulations how patient information can be used and by whom. Nonetheless, the issue itself – who owns the patient information – is commonly missed or bypassed.

Meta, Apple and Microsoft want to collect your biometric and health data. We need to change the way we deal with data before it's too late.

Pandemic ending is more of a question of lived experience, and thus is more of a sociological phenomenon than a biological one. And thus dashboards—which do not measure mental health, educational impact, and the denial of close social bonds—are not the tool that will tell us when the pandemic will end.

If you’re getting health care in the U.S., chances are your providers are now trying to give you a better patient experience through a website called MyChart. This is supposed to be yours, as the first person singular pronoun My implies. Problem is, it’s TheirChart. And there are a lot of them.

A new tech boom is disrupting medicine: Health care is turning into a consumer product. We investigate in this podcast how wearable trackers, such as the Fitbit or Apple Watch, could transform health care.

The draft report offers recommendations for stakeholders about using digital health hardware and software to gather information from remote trial participants - in other words: telehealth is increasingly accepted even in clinical trial.

Big Blue wants out of health care, after spending billions to stake its claim, just as rival Oracle is moving big into the sector via its $28 billion bet for Cerner. IBM spent more than $4 billion to build Watson Health via a series of acquisitions. The business now includes health care data and analytics business Truven Health Analytics, population health company Phytel, and medical imaging business Merge Healthcare. IBM first explored a sale of the division in early 2021, with Morgan Stanley leading the process. WSJ reported at the time that the unit was generating roughly $1 billion in annual revenue, but was unprofitable. Sources say it continues to lose money.

The global pandemic has heightened our understanding and sense of importance of our own health and the fragility of healthcare systems around the world. We’ve all come to realize how archaic many of our health processes are, and that, if we really want to, we can move at lightning speed. This is already leading to a massive acceleration in both the investment and application of artificial intelligence in the health and medical ecosystems.

Early detection of infectious diseases is crucial for reducing transmission and facilitating early intervention. In this study, we built a real-time smartwatch-based alerting system that detects aberrant physiological and activity signals (heart rates and steps) associated with the onset of early infection and implemented this system in a prospective study.

Data monetization in healthcare is a growing business with companies using it to negotiate beneficial terms or conditions with business partners, for bartering information, to sell outright, and/or to add value to an existing offering.

Over 40 million people in the United States had their personal health information exposed in data breaches this year, a significant jump from 2020 and a continuation of a trend toward more and more health data hacks and leaks.

Health data should be like a mountain stream, flowing in a single direction with a clear purpose: improving health and medical outcomes. Instead, it’s a complex puzzle that only data scientists and physicians can meaningfully put together and use.

The Lancet and Financial Times Commission on governing health futures 2030: growing up in a digital world argues digital transformations should be considered as a key determinant of health. But the Commission also presses for a radical rethink on digital technologies, highlighting that without a precautionary, mission-oriented, and value-based approach to its governance, digital transformations will fail to bring about improvements in health for all.

The Verge asked cardiologists, sleep doctors, and sports physicians how all of that data from wearables influences their interactions with patients. For better or for worse, they know it’s here to stay.

23andMe CEO Anne Wojcicki wants to make drugs using insights from millions of customer DNA samples, and doesn't think that should bother anyone. First 23andMe plans to sell tastemakers on their mail-in spit kits as a way to learn sort-of-interesting things about their DNA makeup, such as its likely ancestral origins and the chance it would lead to certain health conditions. Eventually the compnay will able to lower prices enough to make the kits broadly accessible, allowing 23andMe to build a database big enough to identify new links between diseases and particular genes. Later, this research would fuel the creation of drugs the company could tailor to different genetic profiles. 23andMe would become a new kind of health-care business, sitting somewhere between a Big Pharma lab, a Big Tech company, and a trusted neighborhood doctor.

The TEHDAS (Towards European Health Data Space) project develops joint European principles for the secondary use of health data. The work involves 25 countries and you can find project results here.

While Apple Inc. reportedly works on technology for its iPhones to detect depression and cognitive decline, new data shows most of the public does not yet trust technology to help track health and well-being.

This article answers two questions from the perspective of United Kingdom law and policy: (i) is health information property? and (ii) should it be? We argue that special features of health information make it unsuitable for conferral of property rights without an extensive system of data-specific rules, like those that govern intellectual property.

As the future of our healthcare system moves towards electronic healthcare records, we need patient data ownership rights to protect patient care.

In an interview with AlgorithmWatch, Prof. Susan Landau discusses why we need to resist fear in the face of pandemic uncertainty and the normalization of health surveillance technologies — and why the time to have a broad democratic discussion about their future uses is now.

The report identifies the ethical challenges and risks with the use of artificial intelligence of health, six consensus principles to ensure AI works to the public benefit of all countries. It also contains a set of recommendations that can ensure the governance of artificial intelligence for health maximizes the promise of the technology and holds all stakeholders – in the public and private sector – accountable and responsive to the healthcare workers who will rely on these technologies and the communities and individuals whose health will be affected by its use.

In the wake of COVID, a pandemic treaty could be a way to agree on data access before the next emergency strikes.

Covid exposed the fragmented reality of US health records. Now an effort to bring together data from millions of patients starting to show results.

NHS patients in England will get greater control over their health and social care data under plans set out by the government. Critics fear data could be misused but the health secretary says a new strategy will make it more secure.

If you live in England, all your encounters with your GP – information about your physical, mental and sexual health – could be ‘sold’ to third parties.

Big scandal in France around personal data use in the context of health. Pharmacists are selling without consent data of their clients (for 6 EUR/month for the entire shop!) to an entity that is supposed to act in the public interest, but seems to be engaged in marketing as well.

Since September 2020, the Independent Panel has systematically, rigorously and comprehensively examined why COVID-19 became a global health and socio-economic crisis. Now it presented its findings and recommendations for action to curb the COVID-19 pandemic and to ensure that any future infectious disease outbreak does not become another catastrophic pandemic.

A bird’s-eye view of the corporate topography reveals that, even aside from the big tech titans, more and more companies are acquiring talented AI teams at ever faster rates. Not all AI applications are treated equally, however, and what’s telling is the data on the type of technology that’s being bought in these acquisitions, as it offers a window into how AI might significantly change certain industries in the coming years.

There is a whole wave of new apps becoming available that can store your electronic health records from hospitals or doctors. As health data is easy to monetize, these apps tend to be “free” for users – insurance companies are happy to pay for it. The Kailona app is here to offer a real alternative. It supports the standards used by doctors and hospitals to exchange data, and gives you the ability to decide who to give access, to what and for how long.

Data-driven digital health technologies have the power to transform health care. If these tools could be sustainably delivered at scale, they might have the potential to provide everyone, everywhere, with equitable access to expert-level care, narrowing the global health and wellbeing gap. Conversely, it is highly possible that these transformative technologies could exacerbate existing health-care inequalities instead.

Global.health enables open access to more than 5 million anonymized Covid-19 records from 160 countries. Each record can contain dozens of data points about the case, including demographics, travel history, testing dates, and outcomes.

Global.health enables open access to more than 5 million anonymized Covid-19 records from 160 countries. Each record can contain dozens of data points about the case, including demographics, travel history, testing dates, and outcomes.

Data modernization is the next step in the agency’s overhaul of its approach to technology and data, and we are pleased today to announce the Data Modernization Action Plan.

Data modernization is the next step in the agency’s overhaul of its approach to technology and data, and we are pleased today to announce the Data Modernization Action Plan.

Data modernization is the next step in the agency’s overhaul of its approach to technology and data, and we are pleased today to announce the Data Modernization Action Plan.

The long-awaited report "Assessment of the EU Member States' Rules on Health Data in the Light of GDPR" has finally been published. Based on a string of workshops and consultations in the first half of 2020, the report provides a comprehensive overview of the fragmented approach on the use and re-use of health data across Member States. (also available: Country fiches for all EU member states)

Secondary use of patient health data can be a boon for medical research and development, but only if researchers can cultivate patient trust in the system.

Scientific advances from deep brain stimulation to wearable scanners are making manipulation of the human mind increasingly possible, creating a need for laws and protections to regulate use of the new tools.

The privacy of Electronic Health Records (EHRs) is facing a major hurdle with outsourcing private health data in the cloud as there exists danger of leaking health information to unauthorized parties. In fact, EHRs are stored on centralized databases that increases the security risk footprint and requires trust in a single authority which cannot effectively protect data from internal attacks. This research focuses on ensuring the patient privacy and data security while sharing the sensitive data across same or different organisations as well as healthcare providers in a distributed environment.

In a first, India #healthIT regs mandate Separation of Concerns (#APIneutrality) between processors and patient-directed controllers.

The NHS in 2030 project imagines a world where citizens are able to easily share their health data in a standardised format and in real-time with studies operating on a large or a small-scale.

The European Data Protection Supervisor (EDPS) published it's Preliminary Opinion on European Health Data Space.

This Special Publication outlines a number of potentially valuable policy changes and actions that will help drive toward effective, efficient, and ethical data sharing, including more compelling and widespread communication efforts to improve awareness, understanding, and participation in data sharing.

The rapid rollout of digital health approaches in the ongoing global COVID-19 pandemic has neglected to prioritize data privacy and is a missed opportunity for building users’ trust in these technologies for future outbreaks and quotidian healthcare.

And here another paper: "Patient trust must come at the top of researchers’ priority list"

Here inFinland, a private psychotherapy clinic was hacked, and the therapist notes for up to 40,000 patients were stolen. Now the attacker has emailed the victims, asking each for 200 € ransom in Bitcoin.

The public health crisis is laying a dangerous foundation for the future surveillance state.

How the resue of data can create new services for the benefit of all

IBM will provide digital health solutions based on decentralized identiy technologies including open-source (hyperledger) and open standards (w3c) to the National Institutes of Health. This will help address the COVID-19 pandemic in human-centric way.

The eHealth Initiative & Foundation (eHI) and the Center for Democracy and Technology (CDT) released A Draft Consumer Privacy Framework for Health Data. The Framework includes a description of the health data that warrant protection, as well as the standards and rules that should govern them.
Note that the Draft does not say whether the Framework will be CC-licensed so that un-audited community open source and non-commercial entities could still use it as a voluntary assertion without paying for the certification audits.

Smart thermometers, digital pills: the Internet of Bodies connects and analyses our health data. Here's what we must do to make the technology work for us.

The European Medical Writers Association (EMWA) invited MyData to write a feature article as part of their June 2020 Data Economy edition. With a heavy academic and health theme, Casandra from the health data thematic group took up the request to bring together experts from the community on writing a MyData article. 14 individuals from 9 countries contributed to shape the article around the 6 MyData principles drawing from real-world scenarios. The publication points to actionable areas for policy makers, healthcare stakeholders, and medical communicators to advocate for data rights. The article is open-access and publicly available on the EMWA journal website.

As the U.S. reckons with centuries of structural racism, an important step toward making health care more equitable will require transferring control of health records to patients and patient groups.

An patient expermiment to setup our own community research and try to find out how effective our treatments are, based on data we collect ourselves.

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

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

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

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

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.

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.

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

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

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

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.

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.

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.

Privacy is big question, as governments seek access to DNA data.

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.

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.

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.

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.

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

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

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

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.

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.

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.)