Where is my medical file?

Sat, 2011-09-17 18:16
17. September 2011
While I have complete records of my bank transactions and my insurance contracts, properly filed in ring binders at home, my medical file, a crucial resource for my personal well-being, is dispersed across the country, stored in files of various physicians and hospitals and out of my reach. With today’s information technology we can do better, but making a change in today’s health information infrastructure will require much more than just implementing hardware. 
A few weeks ago I broke my arm. I went to the emergency room of the nearest hospital, x-rays were taken and the fracture was attended to. While my arm was in the cast it started to hurt badly, and it got worse a few days after the cast had been removed. I had to consider the possibility that the hospital had overlooked another fracture, but I had no access to the x-rays, although I even had paid for. The hospital was not helpful and in the end I had to order another scan from another radiologist (and paid again for it). I was assured all was well, and the new images went into his file - again inaccessible for me.

Since I was born I left a trail of medical documents, scattered across the country and beyond. Nobody feels the necessity to assemble, order and sort them, and nobody has the full overview of my documented medical condition. My medical file is dispersed across  paper archives, in local physician IT systems, all in different, incompatible formats - physically available but effectively inaccessible. Many of them have already been destroyed by their keepers after the legal retention period has expired - without my knowledge or approval.  

A technical solution is (almost) easy - one central patient file, based and operated on one common technical platform, all physicians, hospitals and caregivers connected, with full oversight by the patient. Every bit of medical information stored in it, and every participant with  full insight. The technology required for this central record is available today, many solutions already implemented. 
But it is the implementation strategy that matters. Recently Google had to admit the failure of their health record project, they had not been able to create a critical mass of users. No wonder - their implementation strategy was too narrow.

Healthcare is a complex network of many stakeholders, and a common record must generate value for everyone. To complicate things some stakeholder relations are rather difficult - e.g. physicians and insurance companies. The physicians I visited don’t have any incentive to care for my medical file - the documents they create are not mine but part of their medical files, evidence for their professional services and receipt for their reimbursement. Sharing them with their patients may backfire in many ways - patients may, for example, receive the evidence they need to sue their doctors for treatment errors or may misinterpret their medical condition.
The value of medical documentation is different for the stakeholders. Patients will benefit most from their complete, curated medical files, but they will realize the need only once they become ill. Information from patient files may provide huge values to medical research, epidemiological prevention, healthcare planning and financing, but this information is not accessible for researchers, planners and payers.  

The implementation of a common patient record needs to address these issues. Healthcare stakeholders with informational needs must incentive the ones who create information (mostly patients and physicians). Conflicting stakeholders need to agree on compromises, patients must take responsibility for managing their data. Patient data must be protected by the highest security standards without making them inaccessible for any further use. Medical record data must be explained to patients in an understandable way, without replacing the physician as the primary contact person.

So many things to consider, so many issues to solve. But the common record is the solution to many of todays problems. I am working to make it a reality. And you?  Ask yourself - where is your medical file when you need it?