Patient Participation

"Medical Records" is huge area. Which records are we talking about? A single doctor's records about individual patients? Prescription records? A hospital's records? Records that are interoperable among doctors, specialities and institutions? Records about individual patients by name? Records about a specific condition? Anonymous records across large populations that can we aggregated and used for valuable research? What functionality should all of these have and how can they be integrated? These are huge issues.

On a simple patient level, I can tell you that no doctor or institution is keeping track of my records in a way that will be useful to me. And, I don't see that happening any time soon.

I've come across a very interesting organization that I recommend you check out: the Society for Participatory Medicine. www.ParticipatoryMedicine.org, which is taking this thought to the next level. The patient is at the center of her/his care. I learned about this organization through the Twittering of a very interesting guy who goes by the handle epatientdave. Check out his recent webcast. http://bit.ly/1cYdKo

Why do I care about EHRs?

Many people have asked why I'm focusing my efforts on electronic heath records. Computerizing medical records has been on my mind for a long time based on personal experiences. I don't know anyone who has died or been badly mistreated as the result of handwritten records, as Denis Quaids children were.

• But when I visited an Aunt who was dieing of brain cancer, I discovered that her primary doctor had no idea what the others doctors were doing and couldn't figure it without calling doctors and the pharmacy.
• Several years ago, I asked one of my doctors for my records, which he gave me and which were totally unreadable. Useless.
• A friend of mine recently had moderately serious surgery at a major university hospital. Over the weekend, she was in terrible pain. Instead of going to a highly praised emergency room close to her home, she drove to the prestigious hospital where she had been treated, thinking that its emergency room could pull up her records and understand better what might be causing the pain. Wrong. The emergency room said it would take two days to get her records ... from their own hospital. This is just plain wrong.
• Plus it drives me nuts having to write my family history, etc. every time I see a new doctor and they still don't really have enough information to make fully informed decisions.

Of course, there are a lot of other aspects of health care that drive me crazy: doctors not coordinating their efforts; insurance company and medical institution bureaucracies; the need for patient advocates; the fact that a hospital cannot tell you how much your treatment may cost, etc.

But given my technology background, the medical record area seems appropriate. And despite the huge complications -- security/privacy, interoperability, standards, the cost, etc., this area seems like a relatively simple piece of health care reform where I could have a huge impact. I also think that patients/people need to have more awareness and control over their own health care, which having a formal record could encourage that. But more on that another day.

The Importance of Electronic Medical Records

No matter what you call them -- EMRs, EHRs, etc. -- there is an over-whelming need for electronic documentation that tracks health care. It's important to the individual, the doctor, medical care institutions, research and development organizations, and payment entities. Today, the medical profession, for the most part, is still not even in the 20th century but in the 19th century with handwritten records. This is nuts. At least now a days no one is laughing at the old joke about doctors' legendary bad handwriting. We get it: bad handwriting kills people.

What is more, high-quality medical records could save time, money and lives. They could increase our knowledge many times over. We have the technology. Now we need to will to make them happen.

Fortunately, there are many companies, government agencies and professional associations working toward this.

My goal is to find a role for myself advocating for, and educating consumers about, the immediate, no-excuses implementation of electronic health records. This is an open process at the moment. And, I will keep you posted on what I learn. Stay tuned. All suggestions are greatly appreciated.