The following is an interesting comment by Miles Hochstein, Program Director Omnimedix Institute in reply:

Jean,
I enjoyed perusing your PHR blog, since it’s a about topic that is very much on our minds here at Omnimedix Institute. I invite you to learn more about the independent nonprofit institute (Omnimedix Institute) that is developing, deploying and operating Dossia here, http://omnimedix.org/dossia.html and to read about our commitment to the same principles that you eloquently describe: http://omnimedix.org/phrbasics_article1.html

In addition some more specific answers to consumer concerns are provided at the Dossia web site here: http://dossia.org/overview.html and here: http://dossia.org/faq.html

I strongly agree with you on the importance of data being held by a neutral third party, and the entire Dossia effort is in fact founded on a separation between the employer funders and the ownership of the data. We at Omnimedix are totally committed to privacy as a consumer right and as the basic foundation for the successful adoption of Personal Health Records. In funding this project, the Dossia Founders group have endorsed these ideas as well. It is because we share your privacy concerns that we have designed the Dossia system in the manner described above, as a secure and independent infrastructure to support true personal health records, controlled by the individual, institutionally independent of the employer, protected by financial level security systems (for example, never stored entirely in a single location, but rather in a federated data base), a record that will follow the person for life. There are many important details to discuss in how this vision will be realized but I believe that we at Omnimedix share your perspective. I also would say that to my knowledge the Omnimedix Institute / Dossia project is the only PHR project now nearing deployment that meets the standards for institutional independence, data control, privacy and consumer rights that you describe.

We’re doing things differently, and we are optimistic that by doing the right thing we will bring the power of PHRs to many more people than have them today. Thanks for creating a blog about PHR issues. I look forward to reading your blog again.

Miles Hochstein Program Director Omnimedix Institute

You know how it is when you hear or learn of something for the first time and then all of a sudden this newly found thing suddenly appears before you ALL THE TIME?

Many people have health issues. Heck, I’d venture to say all of us have health issues of some kind:

I’ve been asked to put a request out here. MyHealthMyWorld.com, my sponsor, is thinking of getting others who feel it important to take charge of their health care and their medical records – to start blogging about their own experiences.

To put it in words better than I wrote above, let me quote Geoff Purdom, Ph.D, one of the board members of the MyHealthMyWorld co-operative. He likens this idea to creating a "community of health diaries – writers sharing their experience for the common good."

The different blogs – provided free by MyHealthMyWorld.com and set up for you in case you have no experience blogging – would talk about each person’s specific situation. For example, someone may write about dealing with the health care system while caring for a child with ADD. Another could blog about his diabetes treatment and how it affects his lifestyle. Another could write about her progress as she recovers from kidney surgery or chemotherapy. Another could post regularly about his challenge to stop smoking and lose 20 pounds at the same time.

Actually, just about anything could be written about because we all have health issues. Even if we don’t have HEALTH ISSUES, we still deal with our health each and every day on some level, even if it’s just a promise to ourselves that we’ll eat more fruits and vegetables, or exercise three times a week or take that tap dancing class we’ve been wanting to….. However the most likely value is to people who would like to either create a record for themselves to help their own convalescence or if you think you would like to share your experience of dealing with a chronic oor other health issue to help others.

If you’d like to be a part of this self-help community, if you have ideas about how you think this community should be run, please contact Geoff at myblog@myhealthmyworld.com. It is free and easy to setup.

So I was Google-ing some other blogs to see if anyone else writes about personal health records and I came across this one by Aniruddha Malpani, MD, an IVF specialist who happens to practice in India. He’s described on the blog – where he’s actually a guest blogger; the blog where this post is located is not his – as an “ardent patient advocate.”

That’s putting it mildly.

Dr. Malpani believes patients should be the one to own and control who has access to their medical records. Period.

What’s more, he’s passionate that patients should own and control their medical records via interactive (or online) personal health records.

He writes:

The reason the healthcare system today is sick is because it is so doctor-centric. The best way to heal the system is by putting patients at the center of it; and the most efficient way of doing this is by allowing patients to own their PHR - personal health records. The web allows us to provide everyone with a free PHR; and this is a major business opportunity, as healthcare undergoes a dramatic change over the next few years. PHRs are likely to be a major catalyst , because they will allow patients more control over the healthcare they receive. Patients are the largest untapped healthcare resource and armed with a PHR, they won’t feel so powerless any more !

Can you hear my heartbeat pick up its pace? I’m falling for this guy. He continues.

For example, let’s see how much better a visit to your doctor could be if you had an online PHR.

One day before your appointment, you receive an automatic email reminder. You review your personal health records on the internet, and take a printout which summarizes your past medical history and your medications. An intelligent program on the site asks you questions related to your headaches, which you can review and answer. It also guides you about what questions you need to ask your doctor, and you can print these out to take with you to your doctor. It also provides you with more information about headaches and self-management options.

I’m going to the get the vapors in a minute! Speak to me the words I long to hear, Dr. Malpani!

And so he does:

…. [I}deally the health record should be the patient’s story – from the patient’s point of view ! A patient-owned health record (which includes the patient’s personal views and social background as well) can enable a true partnership and collaboration between patient and doctor.  

I tell you, I’m swooning:

How can we get enough patients to keep a PHR? We need to provide them clever incentives to do so ! We can use either a top-down approach ( for example, health insurance plans can require their subscribers to keep PHRs ; and provide a discount for those who do so faithfully ); or a bottom-up approach – by creating communities of empowered patients.

There’s a lot more to this post, a lot that makes a ton of sense. I hope he’s sent this letter to ’s legislators. To CEOs of HMOs. To the deans at Harvard and Stanford medical schools, et al.

There’s a , a lot that makes a ton of sense. I hope he’s sent this letter to ’s legislators. To CEOs of HMOs. To the deans at Harvard and Stanford medical schools, et al.

 Sending you tons of blog love, Dr. Malpani. Ooodles of love.

Kisses,
Jean

There’s a , a lot that makes a ton of sense. I hope he’s sent this letter to ’s legislators. To CEOs of HMOs. To the deans at Harvard and Stanford medical schools, et al.

There’s a , a lot that makes a ton of sense. I hope he’s sent this letter to ’s legislators. To CEOs of HMOs. To the deans at Harvard and Stanford medical schools, et al.

I came across a recent blog post by physician Mark Frisse that talks about what he believes – and welcomes — to be a growing interest in personal health records, especially online PHRs. Dr. Frisse is a professor of biomedical informatics at Vanderbilt University (biomedical informatics is a term used to describe the organization, use and management of health information) and he calls PHRs "a critical factor in better health care."His blog post posits that there will be "struggles for power" over ownership of the PHR. "Who will really own the record?" Good question. As a new user of a PHR (you can read about my first attempt at starting my own here) I’d like the answer to "who owns it" be" me and my doctor."But I know it’s not that simple, yet I’m hoping it can become simple. If the medical community and consumers can together craft a personal health record program that can also be used as a bona fide medical record, I think we’ll have a revolution on our hands. If creators of personal health record software can make that software easy to use and easy to update FOR CONSUMERS, I think consumers will take to it easily. The problem as I understand it now - and I readily admit I’m just in the beginning stages of creating my own PHR – is that starting one can be tedious and a chore for consumers raised in a "I want it when I want it I want it, and when I want it, I want it NOW" culture. After all, I may know a PHR can help me and my family. I may know that I really should take more control over my own health care. But who has the time? Between work, between keeping a household, between watching over our children, between trying to have some semblance of a personal life – between taking three hours to have a date with my husband in the only three-hour window of our week – or putting together a personal health record ("Ooo! Sexy!") which would I or you or anyone choose? Sorry, PHR, but my husband is cuter. I’ve an idea that might help solve that problem. I’m going to think on it a bit and I’ll talk about it in my next post.