Informação relevante
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.

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.

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.

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.

Abusive Surveillance in the Name of Public Health

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

Towards trustworthy health data ecosystems

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

Rumo a ecossistemas de dados de saúde confiáveis

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

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.

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.

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.

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: 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.

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.

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.

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.

Save our NHS

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

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 https://mydata.org/webinars 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)

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

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
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.


Ferramentas
Ciitizen

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.

FIWARE

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.