We, here at Cloud Ave, are a strong advocate of putting the personal health records (PHR) online (Health 2.0 for those interested in terminologies). In my predictions for 2009 in the field of Cloud Computing, I have highlighted the possibility of Health 2.0 gaining steam this year.
We will see a stronger support towards Health 2.0 with Microsoft andGoogle leading the way. Any attempt by Obama administration to revamphealthcare will include a Health 2.0 strategy.
We have spoken a bit about various Health 2.0 services available in the market. I am somewhat neutral about Google Health while Zoli is downright critical of these services for various reasons. However, we don’t have a second opinion when it comes to having our health data online. We want our health data on the Clouds and we want it fast.
In fact, I am a bit obsessed with the idea of data ownership. It is my strong opinion that we (the users) own our data and the service providers have no rights to own it. In my post on Google Health, I have discussed about the importance of owning one’s health data.
Online healthrecords are important. The complete control of the records should begiven to the users. The security and privacy of the records should begiven the utmost attention.
Today, we are seeing the first baby steps taken to ensure that the ownership of health data stays with the patients rather than health care provider and/or insurance company. Several companies and thought leaders from the industry have come together, voluntarily, to help protect the patients’ rights and ownership of their health care data. The net result of their efforts is the launch of HealthDataRights.org, a non-binding declaration of people’s rights with respect to their health data. This is a result of coming together of thought leaders, academicians, doctors, IT companies like Google and Microsoft, Pharma companies, etc..
According to this declaration, people
- Have the right to our own health data
- Have the right to know the source of each health data element
- 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
- Have the right to share our health data with others as we see fit
Online PHR is important in any attempts to reform health care. With it comes the need to ensure the data ownership to the patients. Though this effort doesn’t amount to anything substantial, it can serve as a foundation for any discussion on how to advance Health 2.0 and empower the patients. I strongly recommend the posts written by Tim O’ Reilly and Adam Bosworth on this topic. If my post and the posts by Tim and Adam convinces you about the need to protect data ownership and rights, head over to the HealtDataRights.org website and endorse the declaration. If you need any further information about this declaration and whether it violates any of the health care regulations, check out their FAQ. Online PHR are important to the very success of the health care system and it is important that we do it right from the beginning. If we have to do it right, we have to take control of ownership of our data and know our rights. This effort goes a long way in doing it right.
“Today, we are seeing the first baby steps taken to ensure that the ownership of health data stays with the patients rather than health care provider and/or insurance company.”
Not by HealthDataRights.
The principles HealthDataRights proposes DO NOT lead to patient ownership of data. The “rights” they promote are very deceptively worded. But if you go to the FAQs page on their website they actually state clearly that “NO”—they do not support patients’ longstanding legal and ethical “exclusive rights” to their personal data.
Their entire “rights” message is false and misleading: the stimulus bill guarantees that we have the right to electronic copies of all our health data. The right to copies of personal health data is NOT threatened at all, it was just affirmed in federal law.
Clues that HealthDataRights is NOT a real consumer rights organization but a fake, industry supported shill:
1) Google, the health data mining industry, and the for-profit research industry support these “rights”. Since when are data miners willing to cede control over any of the personal data they steal or collect about us?
2) there are no members and no board listed on the website
3) they claim to have no funding, except individuals that are not named
4) the “rights” are cleverly designed using weasel words to sound very much like what Americans want but DO NOT state unequivocally that Americans should either own their data or have the right to control all uses of their health data.
To fight for the rights you REALLY want, you will have to join a real consumer organization, that actually represents YOU.
See http://www.patientprivacyrights.org
Deborah C. Peel, MD
Founder and Chair, Patient Privacy Rights
[..] Health Care Data: Know Your Rights (cloudave.com) [..]