Informação relevante

Individuals Simple read

It’s time for individuals — not doctors or companies — to own their health data

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.

Business & Government Advanced read

Governing health futures 2030: Growing up in a digital world

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.

Individuals Simple read

The unexpected health impacts of wearable tech

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.

Business & Government Simple read

All Those 23andMe Spit Tests Were Part of a Bigger Plan

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.

Business & Government Intermediate read

TEHDAS Results

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.

Business & Government Simple read

A Major Obstacle to Tech Companies Developing Health Apps: About 2 in 3 Adults Worry About Their Privacy

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.

Individuals Advanced read

Patient data ownership: Who owns your health?

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.

Individuals Intermediate read

Own Your Health Data

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

Individuals Intermediate read

Making sense of digital contact tracing apps for the next pandemics

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.

Business & Government Intermediate read

Ethics and Governance of Artificial Intelligence for Health (PDF, 165 pages)

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.

[Simple] Wanted: rules for pandemic data access that everyone can trust

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

Procura-se: regras para acesso a dados pandêmicos em que todos possam confiar

Com a COVID-19, um tratado pandêmico pode ser uma maneira de se chegar a um consenso sobre o acesso a dados antes que a próxima emergência ocorra.

[Simple] The US finally has centralized medical data

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

Os EUA finalmente centralizaram os dados médicos

A pandemia expôs a realidade fragmentada dos registros de saúde nos Estados Unidos. Agora o esforço para reunir dados de milhões de pacientes está começando a mostrar resultados.

[Simple] NHS data strategy: Patients will get more control over data

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.

Estratégia de dados do NHS: os pacientes terão mais controles sobre dados

Os pacientes do sistema público de saúde inglês (NHS) terão maior controle sobre seus dados de saúde e assistência social, de acordo com o novo plano divupelo governo. Críticos temem que dados sejam mal utilizados mas o Secretário de Saúde diz que uma nova estratégia tornará a situação mais segura.

[Simple] Matt Hancock has quietly told your GP to hand over your health data

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.

Matt Hancock silenciosamente pediu para que seu médico entregue seus dados de saúde

Caso você more na Inglaterra, todas as informações sobre sua saúde física, mental e sexual discutidas com um Clínico Geral do sistema de saúde pública (NHS) podem ser 'vendidas' para terceiros

[Intermediate] Cash investigation - Our personal data is worth gold! (Video in French)

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.

Programa "Cash investigation" - Nossos dados pessoais valem ouro! (Vídeo em francês)

Um grande escândalo na França sobre o uso de dados pessoais no contexto sanitário: farmacêuticos estão vendendo dados de seus clientes sem o consentimento desses (a € 6 por mês para a farmácia inteira!) para uma entidade que supostamente age em prol do interesse público, mas que aparentemente também está voltada para o marketing.

[Intermediate] COVID-19: Make it the Last Pandemic

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.

COVID-19: que essa seja a última pandemia

Desde setembro de 2020, o Independent Panel tem examinado de forma sistemática, rigorosa e compreensiva por que o COVID-19 se tornou uma crise sanitária e socio-econômica global. Agora, o painel apresenta resultados e recomendações de ações que restrinjam a pandemia do COVID-19 e garantam que qualquer futuro surto de doença infecciosa não se torne mais uma pandemia catastrófica.

A batalha pelas startups de IA irá mudar a privacidade que conhecemos até hoje

Uma visão de cima da topografia corporativa nos revela que, para além dos titãs da big tech, mais e mais empresas estão adquirindo times de IA em um ritmo cada vez mais acelerado. Nem todas as aplicações de IA são tratadas da mesma forma, no entanto, e o que demonstra isso são os dados sobre o tipo de tecnologia que está sendo comprado nessas aquisições. Esses dados nos revelam como a IA pode mudar de maneira significativa certos ramos da indústria nos próximos anos.

[Simple] The Battle for AI Startups Will Change Privacy as We Know It

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.

[Simple] Nextcloud health app doesn’t sell your data

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.

O aplicativo de saúde da Nextcloud não vende os seus dados

Há uma nova onda de aplicativos disponíveis capazes de armazenar seu histórico de saúde eletrônico, proveniente de hospitais ou médicos. Como os dados de saúde são facilmente monetizáveis, esses aplicativos geralmente são "gratuitos" para os usuários - as companhias de seguro ficam felizes em pagar por eles. O aplicativo Kailona chega para apresentar uma alternativa real. Ele mantém o padrão utilizado por médicos e hospitais para que a troca de dados ocorra, e dá ao usuário a habilidade de decidir quem pode ter acesso a eles, por quanto tempo e para que finalidade.

[Advanced] Health data poverty: an assailable barrier to equitable digital health care

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.

Pobreza de dados de saúde: uma barreira atacável para cuidados de saúde digitais equitativos

Tecnologias digitais de saúde baseadas em dados possuem o poder de transformar os cuidados aplicados à saúde. Se essas ferramentas pudessem ser substancialmente distribuídas em escala, elas poderiam ter o potencial de providenciar a todos, em todos os lugares, com um acesso igualitário ao atendimento mais  especializado, reduzindo a lacuna da saúde global. Por outro lado, há uma alta possibilidade que essas mudanças tecnológicas possam aumentar as desigualdades existentes no campo da saúde. 

[Simple] Backed by Google, epidemiologists launch a sweeping Covid-19 data platform 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.

Apoiados pelo Google, epidemiologistas lançam uma abrangente plataforma de dados sobre o COVID-19 

A permite o acesso aberto a mais de 5 milhões de registros anônimos sobre o Covid-19 em 160 países. Cade registro poder conter dúzias de informações sobre o caso, incluindo demográficos, históricos de viagem, datas de testes e resultados. 

[Simple] Backed by Google, epidemiologists launch a sweeping Covid-19 data platform 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.

[Simple] FDA’s Data Modernization Action Plan: Putting Data to Work for Public Health

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.

[Simple] FDA’s Data Modernization Action Plan: Putting Data to Work for Public Health

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.

[Simple] FDA’s Data Modernization Action Plan: Putting Data to Work for Public Health

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.

O Plano de Ação sobre Monetização de dados da FDA (Administração de Alimentos e Drogas): o uso de dados para a saúde pública

A monetização de dados é o próximo passo para a Agência em sua abordagem com tecnologia e dados. Dessa forma, é de bom grado que anunciamos seu Plano de Monetização de Dados (

[Advanced] Assessment of the EU Member States’ rules on health data in the light of GDPR

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)

Business & Government Advanced read

Assessment of the EU Member States’ rules on health data in the light of GDPR

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)

[Advanced] Assessment of the EU Member States’ rules on health data in the light of GDPR

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)

[Intermediate] Patient trust must come at the top of researchers’ priority list

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.

[Intermediário] Cientistas que defendem 'neuro-direitos'

Os avanços científicos, desde a estimulação cerebral profunda até scanners vestíveis, estão tornando a manipulação da mente humana cada vez mais possível, criando uma necessidade de leis e proteções para regular o uso das novas ferramentas.

[Intermediate] Scientists pushing for 'neuro-rights'

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.

[Advanced] Healthchain: A novel framework on privacy preservation of electronic health records using blockchain technology

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.

[Avançado] Healthchain: uma nova estrutura sobre a preservação da privacidade de registros eletrônicos de saúde usando a tecnologia blockchain

A privacidade dos registros eletrônicos de saúde (EHRs) está enfrentando um grande obstáculo com a terceirização de dados privados de saúde na nuvem, pois existe o perigo de vazamento de informações de saúde para partes não autorizadas. Na verdade, os EHRs são armazenados em bancos de dados centralizados, o que aumenta a área de cobertura do risco à segurança e exige confiança em uma única autoridade que não pode proteger os dados de ataques internos com eficácia. Esta pesquisa se concentra em garantir a privacidade do paciente e a segurança dos dados, enquanto compartilha os dados confidenciais entre organizações iguais ou diferentes, bem como provedores de saúde em um ambiente distribuído.

[Advanced] India National Digital Health Mission: Health Data Management Policy

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

[Avançado] Missão Nacional de Saúde Digital da Índia: Política de Gerenciamento de Dados de Saúde

In a first, India #healthIT regs mandate Separation of Concerns (#APIneutrality) between processors and patient-directed controllers. Em um primeiro momento, as regulamentações da #healthIT indiana exige Separação de Preocupações (Separation of Concerns, #APIneutrality) entre processadores e controladores direcionados ao paciente.

[Simple] What if people controlled their own health data?

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.

[Simples] E se as pessoas controlassem seus próprios dados de saúde?

O projeto NHS in 2030 imagina um mundo onde os cidadãos possam compartilhar facilmente seus dados de saúde em um formato padronizado e em tempo real com estudos operando em grande ou pequena escala.

EDPS: Parecer Preliminar sobre o Espaço Europeu de Dados sobre Saúde

A Autoridade Europeia para a Proteção de Dados (EDPS) publicou o seu Parecer Preliminar sobre o Espaço Europeu de Dados de Saúde.

EDPS: Preliminary Opinion on the European Health Data Space

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

Health Data Sharing to Support Better Outcomes

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.

Compartilhamento de dados de saúde para oferecer melhores resultados

Esta Publicação Especial descreve uma série de mudanças de política potencialmente valiosas e ações que ajudarão a impulsionar o compartilhamento de dados ético, eficiente e eficaz, incluindo esforços de comunicação mais abrangentes e abrangentes para melhorar a conscientização, compreensão e participação no compartilhamento de dados.

Build trust in digital health

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"

Psychotherapy centre's database hacked, patient info held ransom

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.

Banco de dados do centro de psicoterapia é hackeado, e informações do paciente acabam retidas em resgate

Na Finlândia, uma clínica particular de psicoterapia foi invadida e as anotações do terapeuta de até 40.000 pacientes foram roubadas. Agora o hacker enviou um e-mail às vítimas, pedindo a cada uma um resgate de 200 € em Bitcoin.

Vigilância abusiva em nome da saúde pública

A crise de saúde pública está lançando uma base perigosa para o futuro estado de vigilância.

Business & Government Intermediate read

Abusive Surveillance in the Name of Public Health

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

Rumo a ecossistemas de dados de saúde confiáveis

Como o resgate de dados pode criar novos serviços para o benefício de todos.

Towards trustworthy health data ecosystems

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

NIH concede contratos para desenvolver tecnologias digitais inovadoras de saúde para COVID-19

A IBM fornecerá soluções de saúde digital com base em tecnologias de identidade descentralizadas, incluindo código-fonte aberto (hyperledger) e padrões abertos (w3c) para o National Institutes of Health. Isso ajudará a abordar a pandemia COVID-19 de uma forma centrada no ser humano.

NIH awards contracts to develop innovative digital health technologies for COVID-19

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.

Draft Consumer Privacy Framework for Health Data

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.

Projeto de estrutura de privacidade do consumidor para dados de saúde

A eHealth Initiative & Foundation (eHI) e o Center for Democracy and Technology (CDT) publicaram um esboço da estrutura de privacidade do consumidor para dados de saúde. A Estrutura inclui uma descrição dos dados de saúde que garantem proteção, bem como os padrões e regras que devem regê-los. Observe que o Rascunho não diz se a Estrutura será licenciada por CC para que a comunidade não auditada de código aberto e entidades não comerciais ainda possam usá-la como uma afirmação voluntária sem pagar pelas auditorias de certificação.

A Internet dos Corpos está aqui, e é assim que ela irá mudar nossas vidas

Termômetros inteligentes, pílulas digitais: a Internet dos Corpos conecta e analisa nossos dados de saúde. Aqui está o que devemos fazer para que a tecnologia funcione para nós.

The Internet of Bodies is here. This is how it will change our lives

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.

MyData: Applying human-centric principles to health data

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.

MyData: Aplicando princípios centrados no ser humano nos dados de saúde

A European Medical Writers Association (EMWA) convidou o MyData a escrever um artigo de destaque como parte da edição de junho de 2020 da Data Economy. Com um forte tema acadêmico e de saúde, Casandra do grupo temático de dados de saúde aceitou o convite para reunir especialistas da comunidade na redação de um artigo MyData. 14 indivíduos de 9 países contribuíram para moldar o artigo em torno dos seis princípios MyData, baseados em cenários do mundo real. A publicação aponta áreas de ação para decisores políticos, partes interessadas na área da saúde e comunicadores médicos defenderem os direitos de dados. O artigo é de acesso aberto e está disponível publicamente no site da revista EMWA.

Como os registros tradicionais de saúde reforçam o racismo estrutural

Conforme os EUA reconhecem séculos de prática de racismo estrutural, um passo importante para tornar os cuidados de saúde mais equitativos exigirá a transferência do controle dos registros de saúde para pacientes e grupos de pacientes.

How Traditional Health Records Bolster Structural Racism

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.

Cluster Headaches - Data to become pain free (Video: 8:00min)

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.

Save our NHS

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

Data Stewards Network: A Call for Action

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

EU Funding for Innovative solutions to tackle Coronavirus outbreak

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

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

MyData Webinar #6: Interoperability of Health Data

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

HHS publishes final regs on info blocking, interoperability

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)

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

How to Make 10 Million Discoveries

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

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

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

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

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.

I Took DNA Tests in the U.S. and China. The Results Concern Me

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

The Open Food Repo

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

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)

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) 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

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

How top health websites are sharing sensitive data with advertisers

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

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

Taxonomy of Definitions for the Health Data Ecosystem

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

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

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.)

Perguntas feitas

[Advanced] Gatekeeper 2nd Open Call launched

The GATEKEEPER project is an EU-funded initiative under the Horizon 2020 Framework Programme. Its main objective is to create a GATEKEEPER that connects healthcare providers, businesses, entrepreneurs, elderly citizens and the communities they live in. This connection between stakeholders will promote an open, trust-based arena for matching ideas, technologies, user needs and processes, aimed at ensuring healthier independent lives for older adults.

[Advanced] Open consultation on the European Health Data Space

The European Commission published the open consultation on the European Health Data Space (EHDS) - an important building block of the European Health Union. The EHDS aims to make full use of digital health to provide high-quality healthcare and reduce inequalities. It will promote access to health data for prevention, diagnosis and treatment, research and innovation, as well as for policy-making and legislation. The EHDS will place individuals' rights to control their own personal health data at its core. The consultation will remain open for responses until 26 July 2021.

[Advanced] European Health Data & Evidence Network: 4th Data Partner Call

The European Health Data and Evidence Network (EHDEN) invites Data partners in Europe to apply for funding to map their health data to the OMOP common data model (CDM). The ambitions of the EHDEN project are high: We aim to standardise more than 100 million patient records across Europe from different geographic areas and different data sources.

[Intermediate] The Fair Health Data Challenge

Does your organisation have a health and well-being solution based on data sharing and fair principles? Take part in this SITRA challenge and register by 9 April 2021!

[Intermediário] The Fair Health Data Challenge

A sua organização tem uma solução de saúde e bem-estar baseada no compartilhamento de dados e princípios justos? Participe do desafio SITRA e inscreva-se até 9 de abril de 2021!

[Avançado] Takeda Digital Health Innovation Challenge

Estamos lançando esta chamada para aplicativos para promover colaborações em saúde digital e redefinir a jornada do paciente.

[Advanced] Takeda Digital Health Innovation Challenge

We are launching this call for applications to foster collaborations in digital health and redefine the Patient Journey.

About the International Vaccination Certificate

I am wondering if anyone has knowledge of the thinking behind the data fields in the current international vaccination certificate - yellow book. I see the definition in the WHO's international health regulations publication, but what I am hoping to find is the supporting discussion around why they wanted the mfg and lot number, as well as what was considered adequate for the issuer certification and supporting document.

MyData in the Time of Coronavirus

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'

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.


Ciitizen helps you collect, summarize, and share your medical records digitally, free of charge. You can use it to get a second opinion, coordinate with caregivers, or donate to research. Starting with cancer, we are helping patients take control of their health outcomes.


The Open Source Platform for Our Smart Digital Future.

My Health My Data

MyHealthMyData is a Horizon 2020 Research and Innovation Action which aims at fundamentally changing the way sensitive data are shared. It is the first open biomedical information network centred on the connection between organisations and individuals, encouraging hospitals to start making anonymised data available for open research, while prompting citizens to become the ultimate owners and controllers of their health data.

Quantified Flu

Quantified Flu is a project to explore personal tracking and infectious diseas.