csiblog

Electronic Medical Records: Google and Cleveland Clinic Pair Up

I remember when my wife Kim and I were first searching for a diagnosis for our daughter.  We went from doctor to doctor – Geneticists, Neurologists, Pediatricians, GI’s, etc.  Living in the Boston area we had broad access to a number of doctors who specialized in specific areas – which at first glance seemed great.   And, at some level it is.  However, the fragmentation of the healthcare system in Boston also created a big issue around sharing information between specialists, and accessing medical records.  I can’t even tell you how many times we had doctors cutting and pasting information out of their hospital systems into emails so we could share prior tests with professionals at other hospitals.  You would think that doctors have better things to do with their time.

We oscillated across three separate hospitals in search of a diagnosis -- Mass General, Boston Childrens, and Tufts New England Medical Center.  We found ourselves answering the same questions over and over again.  Finally, Kim put the family tree/ genetic map into a PowerPoint slide and started pulling it out-- the medical professionals looked at her like she was the next coming of Bill Gates.  It saved us about 10 - 15 minutes at the start of every meeting.

Today, we still use doctors at all three hospitals for our daughter.  The medical records are still spread across all of them.  We still spend time transferring information from one hospital to the other.   In fact, I find a bit of irony that with all the money spent on electronic medical records (EMRs) -- which figures into our healthcare costs -- the most comprehensive medical record we have on our daughter happens to be a three ring binder that sits in our home.  Every doctors’ letter is in it, every blood test, and much more – including Kim’s original PowerPoint slide.

For caregivers and patients, not having quick access to their records can be disastrous. For doctors and medical staff, it can be frustrating, time-consuming, and lead to major mistakes in care options.

So the focus these days is on management of electronic medical records, who owns them, where they reside, how to make them portable, how to protect privacy along the way. Both Google and Microsoft have pilot programs to house personal medical records in large databases so that any doctor anywhere can access information about any patient. Of course, there is controversy.

But for us, the larger issue is that there is movement away from the concept that individual hospitals own your information, and toward a more open architecture that favors the patient and not the hospital.

While the important debate about privacy and security goes on, Kim and I are thrilled to see that one hospital, the prestigious Cleveland Clinic, is engaging in a pilot program with Google to store medical records in a central database built by Google. We applaud the Cleveland Clinic’s efforts toward portability and accessibility, and look forward to the results of the pilot.

Brian Costello
carespace.com

For more on this:
techdirt.com
cnn.com
wsj health blog

A Site For Parents of An Autistic Child

Parents-cafe.com includes extensive resources for parents of autistic children, including a useful blog—Child With Autism. The site provides extensive information on autism—including medical updates, specific advice for living day-to-day with autism, and helpful connections to other sources of information. In short, it’s a useful aggregation of information on all aspects of autism—all geared toward parents.

Multiple contributors include parents of autistic children, experts in the field, and others. Blog posts cover a wide range of topics, such as tips on handling specific life challenges -- getting a haircut, dealing with public restrooms, and more, to educational issues Many are links to updated, autism-specific content on Parent-cafe.com. Others reach further afield.

The blog entries tend to be fairly detailed and specific, and are more educational than newsy. Recent entries – and the blogs are very active -- include an autistic sibling survey, an extensive autism resources directory, and a listing of national and local autism groups.

Missing is the back-and-forth, more conversational tone that would come from a blog that enabled open comments.  So the Child with Autism site is more of a trip to the library than a morning at the coffee shop. But it manages to convey a huge amount of autism information efficiently to parents searching for help.

From former U.S. Secretary of Education Dr. Robert Paige: “I can assure you there is no more powerful advocate for children than a parent armed with information and options.” At Carespace, we take these words seriously, and are in the process of building a platform so that all caregivers -- not only parents of children with special needs-- can gather and connect with each other. We believe that all caregivers have insights and experiences that are common among us – emotional, financial, legal, medical and other issues affect all caregivers.

Stona Fitch
carespace.com