Dataportability officially endorses the Health Data Bill of Rights

We previously wrote in regards to the Dataportability Healthcare Taskforce endorsing the Health Data Bill of Rights.  We are now pleased to announce that the Dataportability project is officially endorsing the Health Data Bill of Rights as stated below ….

In an era when technology allows personal health information to be more easily stored, updated, accessed, and exchanged, the following rights should be self-evident and inalienable. We the people:

• Have the right to our own health data
• Have the right to know the source of each data element
• Have the right to take complete possession of a complete copy of your individual health data, without delay, at minimal or no cost; if data exists in computable form, they must be made available in that form
• Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

The Dataportability project is officially endorsing these bill of rights because it focuses on the core problem of granting consumers both access and control to their data. This belief is completely in-line with the Dataportability view on consumer empowerment.   More so, we also believe that thus far there has been a missing piece of the discussion on practice to consumer interoperability.

Additionally, the Health Data Bill of Rights focuses not on any particular solution or specific implementation. In fact, it stresses that consumers be granted access and control to their data even if it only exists on paper.  This focus on the root problem independent of technology is critical as it sets the necessary foundation.  From this foundation the market can then build solutions.

With the ever increasing role portability is playing within healthcare, it is with great excitement and enthusiasm we endorse these rights.  We strongly encourage you endorse these Health Data Bill of Rights as well.

DataPortability Project Plenary Quarterly Meeting – Q2 09 July 21st 16:00 – 17:00 UTC

FROM: Daniela Barbosa, DataPortability Project chair,
TO: DataPortability Project Members and Supporters
RE: Quarterly Plenary Meeting- Q2 09

As per our 2009 strategic goals, the Steering Group of the DataPortability Project will be responsible for quarterly plenary meetings to engage the community more with what we are doing. The plenary is an important part of the DataPortability Project’s governance framework, which among other things, elects the Steering Group and holds it accountable.

All members of the plenary are invited to this meeting, where the Steering Group can explain how we are tracking against the goals and question Steering members on the DataPortability Project’s future direction and the relevance of work being performed. It also is an opportunity for the community to make binding decisions on behalf of the Project, despite being removed from the day to day operation of it. As with all DataPortability Project meetings, this is open to anyone to participate.

The meeting will take the place on July 21st at 16:00 – 17:00 UTC. As decided in our last plenary meeting meeting hours will rotate quarterly to accommodate our global plenary. Please refer to the meeting agenda page for details about your region, and feel free to add an agenda item.

To be a member of the plenary, all you need to do is “opt-in” into the vote mailing list, by stating your intention to be a member.

We love forward to your participation.

- DataPortability Project Steering Group

Improving portability between the practice and the patient

Dataportability has been focusing on Healthcare for almost a year now with its Healthcare Taskforce. Recently, this taskforce came across the Health Data Bill of Rights.  In summary, the rights are as follows

In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

1. Have the right to our own health data
2. Have the right to know the source of each health data element
3. Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
4. Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

What makes these bill of rights so critical, and why it’s gathering so much momentum with others, is that it focuses on the core problem of granting you the patient access to your data.  Currently, your data is stored in silo’s at many of the different practices you visit and is extremely difficult for you, or other practices to access. However, the conversation in regards to access thus far has been monopolized by standardizing the digital format to increase interoperability between practices.  Practice to practice interoperability is a very important problem to solve.  However, it completely misses the data portability between the practice and the patient.  This bill or rights brings much needed focus on the patient.

I’ve asked the Steering Group of the DataPortability project, to follow the recomendation of the Health Case task force, in fully endorsing these principles

DataPortability Community Invited to Semantic Technologies Conference in San Jose, CA June 14-19th, Free and Discounted Options

We are hosting a DataPortability get-together at SemTech 2009, the Semantic Technology Conference, at the San Jose Fairmont on Monday, June 15, 2009, 6:00pm – 8:00pm.  As an added bonus, when you register to attend this meetup, you will get access to Chris Saad’s conference session which takes place immediately prior (5:00pm-6:00pm)!

You need to register so to register for both opportunities, please use the link below:

https://www.regonline.com?eventID=677058&rTypeID=142122

FREE Access gets you:
–5:00pm – 6:00pm It’s Time for Social Media to Become Personal Media
with Chris Saad, JS-Kit
–6:00pm – 8:00pm Community Discussion : Data Portability and The Semantic Web with Daniela Barbosa DataPortability Project/Dow Jones
and Chris Saad  among other DataPortability Project members
–Ability to network with Semtech attendees!

If you would like to see other attendance options, including tutorials and over 220 hours of educational content, please visit: http://semtech2009.com/2009/registration/

Interested in attending the full conference? Use the DataPortability Discount code: ST9DP
It will give the user $200 off a “full event” or “conference only” registration fee and $100 off a “tutorial day only” fee.

For example: If you are also interested in attending a full Semantic Search Day on Wednesday. Use the code to get you $100 off the day price of $195! http://www.semantic-conference.com/2009/semsearchday/

Questions? What to host a conversation during our community discussion? Please drop me a line at danielavbarbosa [@} gmail.com .

Thanks and see you in San Jose!

Forget Open Standards

Forget Open Standards…

Well, sort of. To date, the DataPortability project has often referred to its vision as “Open Standards based Data Portability”.

The problem, though, is that people don’t get why Open Standards are so important. Some even think that we’re advocating open standards for the sake of open standards. In truth, Open Standards are just a means to an end. It’s time the community started to focus on the end, rather than the means.

The end is not “Open Standards based Data Portability”. Rather it’s what I’m starting to call ‘Peered Data Portability’.

Peered Data Portability differs dramatically from what we have today from Facebook Connect. Here are some diagrams to explain:

FB Connect Version of data portability - Hub n Spoke

The Future of Data Portability - Peered Nodes

Does the peered model look familiar? It should

The Internet is already a Peered environment

In the Hub and Spoke model, a single node controls the transaction and facilitates data sync between participating 3rd parties. This is efficient and always the quickest and most commercially viable way to get the job done (at least for the central node).

The problem, however, is that it has a central point of control, failure and commercialization. A monopoly, or market confusion, is inevitable. At the very least this model leads to reduced innovation along the connections.

Can you imagine if there was only one Web server? One FTP server? One Email server? Companies like Google would have certainly never been allowed to exist. They might have been sued by the Acme Web Server company early in their life much like Power.com is being sued by Facebook today.

The peered approach, is much more analogues to the web itself. It lets a thousand flowers bloom as equal participants in an open ecosystem. It allows and incentivises innovation at all the nodes. It also means that the solution is not a commercial product, but rather part of the fabric of the web itself, much like HTTP is.

Sure, Open Standards may facilitate interoperable peering, but that’s just a technicality along a much bigger journey. So while Open Standards are important, they are certainly not the point. Standards come and go (and some stick). The peered, web-like nature of the Internet will outlive us all.

It’s time to move the conversation up the intellectual stack.

I look forward to the continued emergence of Peered Data Portability.

Note: This is a follow up to my ‘Forget Facebook’ post last year. I don’t mean to pick on Facebook, but their first mover status provides a clear counter-point.

DataPortability Project Analyst (Multiple)- Volunteer Positions

Are you interested in researching and writing about items related to the DataPortability Project and contributing to the projects overall goals? Your writing and commentary will be included in multiple external communications outlets, like the official DataPortability Blog, the DataPortability wiki, ‘newletters’, made available  to media writing on the topic and included in official DataPortability Project conference presentations and additional published materials (all with proper attribution).

What can you contribute? Here are some examples:

Analyst Focus: Technologies

What it means for You: Are you interested in being the DataPortability Project Expert on a specific technologies that the Project advocates? Select one or multiple technologies and become a point person in the Project group to analyze and comment when vendors implement these technologies, when open standards groups make moves to push those technologies further, or when new technologies are being discussed.

Analyst Focus: Vendors
What it means for You: Would you like to be “the go to” expert within the DataPortability Project on specific Vendors? We see a lot of the major vendors bringing to the market key components of data portability. If your passion lies with a specific vendor or two, you can become the Project Expert that the community relies on when information is needed or questions need to be asked possibly even becoming a point person to manage the relationship with these vendors as part of the DataPortability Service Grid project

Analyst Focus: Vertical
What it means for You: It there a specific industry vertical that you would like to monitor that requires industry expertise that you are qualified for and want to be the Project’s point person for as questions, issues and opportunities arise? Become the point person for project members to go to when they need to know the top bloggers, commenters and movers and shakers in that industry and become a liaison and leader for those industry verticals ensuring that for example speaking/presentation opportunities at industry conferences are leveraged.

Analyst Focus:Regional
What it means for You: Do you want to cover Data Portability from a regional perspective? Are issues around data portability different in the country you live in and you want to share those experiences with a global audience? Are you interested in making yourself a regional point person for the DataPortability Project to coordinate meetups, regional discussions and other events on behalf of DataPortability?

Or maybe you have something else in mind?

If any of the leadership roles and ways to contribute interest you, we are looking for multiple DataPortability Project ‘Analysts’ on a volunteer basis to monitor, write and engage with the community and vendors that are affected by data portability.

Working with the DataPortability Community Manager and the External Communications task force you can contribute as much as you want or can in order to ensure that the project continues to be a central place to gather and discover information about topics around data portability in the marketplace.

If you are interested in participating please:

Contact Daniela Barbosa or enter your name and email address on the wiki page and the topic(s) of interest that you are interested in as an official DataPortability Analyst and Daniela Barbosa or Danny Housseas  will
contact you to discuss further.

Welcome to the Official DataPortability Blog

Welcome to the Official DataPortability blog.

It’s run by the DataPortability Communications Action Group. It’s guided by the ratified Blog Charter. A call for bloggers was put out on the Communications Google Group and the General Google Group. More bloggers will be recruited over time.

As the Blog Charter states, the purpose of this blog is specific and clear.

The goal of the ‘Official DataPortability Blog’ is to provide mainstream context, commentary and conversation about people, places, events, announcements and trends along the way to the vision of Data Portability as stated by the Vision document.

We look forward to working with the community to publish and distribute valuable content for the community.

Some posts will be consumer focused, others will be early adopter focused, and others still will be business executive or developer focused. We will try to tag appropriately so you can get a view that’s relevant for you.

The posts will also be distributed via Twitter and our original DataPortability RSS feed.

We are also interested in any sites who would like to distribute sub-sets of our content on a regular basis in order to help echo and amplify the groups work to promote interoperable data portability.

I will leave it to the other authors to introduce themselves. I will do the same in a subsequent post.

Welcome to the blog, I look forward to seeing you in the comments!