Why health data remains incomplete

Dr. William Yasnoff, MD, PhD, FACMI • February 12, 2018 • 3 minute read

Providing good patient care requires complete records. If your provider doesn’t have all your medical history, current medical problems, and a complete list of your medications and test results, how can reasonable judgements be made about what should be done? But this is not how health care works today. Every provider has their own records, and they are not automatically shared. Imagine how dangerous it would be if airplane mechanics only had each airplane’s maintenance records for work done in the current location, rather than all the records? But that’s what we do in the health care sector. Today, no one – not you or any provider – has a complete set of your medical records. That exposes you at least to the possible inconvenience and expense of duplicate testing, and at worst to life-threatening medical errors.

How did this happen? Part of the problem lies with the explosion of medical knowledge. Some baby boomers may recall a time when most of their care was provided by a single general practitioner who had been their doctor from an early age and knew everything about them (the “Marcus Welby MD” style of care for those who may remember this iconic, all-knowing, TV doctor). However, as medical knowledge expanded rapidly, it became impossible for any single physician to master all medical knowledge (or even a substantial fraction of it). The result was more and more specialization and sub-specialization – providers limiting their practice (e.g. to eye diseases) so that they could have an effective grasp of the expertise needed to be proficient. But as this happened, we didn’t change how medical records were managed.

Today, even a healthy middle-aged person is likely to have multiple providers: an internist or family practice physician for general care, a gastroenterologist for colonoscopy screening, an ophthalmologist for eye care, a dermatologist for skin cancer screening, and a dentist for dental care. In addition, you may have records of incidental treatments like flu shots administered in pharmacies or scattered in different cities where you’ve lived. All these providers have their own separate records documenting your care. Hopefully, your internist or family physician will get reports from all the others so as to have a reasonably complete view of your care. But what about a visit to the emergency room or an out-of-town provider while traveling? Your records will not be available when and where they are needed.

The growing use of electronic (as opposed to paper) medical records has the potential to address this problem. But “potential” does not automatically result in a solution. The format and coding of electronic records has not been fully standardized and mechanisms for sharing the records have not been universally adopted. Worse yet, no one has been willing to be responsible for making sure all your records are securely stored and available to any provider you designate.

Now that you understand this, you can be a key part of the solution. Organizations (like Betterpath) are developing and deploying systems that can accept various formats of electronic records from multiple providers, convert them to standard formats, and integrate them into a complete longitudinal record that is securely stored and shareable as you direct. It is anticipated that such “health record accounts” will be free to consumers, so there is no financial barrier to participating. But you have to take the initiative to sign up when you have the opportunity. This is very important because only you have the legal right to insist on copies of all your medical records from every provider. By asserting that right through a trusted third party, you can have the peace of mind knowing that all your health records (and those of your loved ones) will be available when they are needed.

About the Author
William A. Yasnoff, MD, PhD, FACMI has been working to solve complex health information infrastructure problems at all levels of government and industry for 30+ years. Dr. Yasnoff is a pioneer in the field of public health informatics, and has spent the better part of his career working to elucidate and overcome the barriers to comprehensive patient records. He is a Professor of Informatics at Johns Hopkins, Associate Editor for the Journal of Biomedical Informatics, and author of over 400 publications to date. Dr. Yasnoff is currently serving as the Medical Director of Betterpath.