I Really Don’t Want to Be Your “Worst” Patient

The following is a guest blog post by M. Maxwell Stroud, Lead Consultant at Galen Healthcare Solutions.
Max - Healthcare IT
“I really don’t want to be your “worst” patient. Really, I don’t.”  These are the words that I think to myself as I prepare to ask my new specialist if he has interfaces with either of the hospital labs in my hometown 40 miles away.  My provider humors me and lets me know that if I go to one lab he will get a fax, and another and he will be able to view the results in a portal.  Sigh.

I have for a long time kept all of my care to one healthcare organization in town – in part because I am a firm believer in one chart for one person and I personally don’t want to have to deal with the mess of coordinating all of my records or manually schlepping things from office to office.  I love the concept of “one source of truth” and I know how far away we really are from that.  So why venture out of town and (gasp) to different healthcare organization?  Because that is where the best specialist was that was seeing new patients and mine had left town.

As a patient, I get to make that choice.  I get to decide where I get my care – as I should.  I also make the choice knowing that it will result in me having two distinct medical records in orgs 40 miles away from each other.  I also know that it means I am, at times, going to have to put on my advocacy hat and make sure that my records are correct, that my labs got where they need to go and that everyone has the information that they need so that I can get the best care.

Wait. What?  The patient is the only person in this continuum of care who is making sure the right person has the right data at the right time?  Yep.  Some might say that I am a control freak or that I need to relax a little – but I am informed by the life experiences of the patients that have been a part of my life.  I have seen what happened when my father got admitted to the hospital without an accurate medlist available.  I have seen the binder that my sister has to carry with her on the train that has her MRIs and PET scans to take to her next oncology appointment in the city.

It blows my mind that just a little over a month ago I was at the largest healthcare IT conference in the country (HIMSS16) discussing interoperability, and now I am on the phone with the nurse at the clinic because she cannot find my lab results … “Oh wait” she says “they are in the print and scan pile.”  Great.  Just great.

I have heard the argument that patients are not interested in their data.  There is a chance I could be an outlier – I live my life in a world of health data and I am acutely aware of how it is used in my care and the care of others.  I really think the truth is you don’t know how important it is to you until it becomes important to you.  One life event, one family member’s crisis, one rare diagnosis – and you begin to understand that you are the most important person in your own healthcare.

We have centered record keeping around the physical location of care.  This makes sense when you think historically.  Patients used to be less mobile, receive care locally and lived locally.  Additionally, the role of the “legal medical record” is a legal representation of the care provided and decisions made by a healthcare organization.  Organizations still need to document medical decision making, but patients are becoming more and more mobile.  People move from city to city, or even within health networks in the same town.  In the digital age, even if the legal medical record lives with the provider —  the data needs to follow the patient.

We can do better by patients and consumers.  The information is there, it is just not yet connected in the way that will make it available, actionable and meaningful to everyone who needs it.  It’s not just about finding an easy button to import discrete data, but also a culture change.  Truly putting the patient at the center of the data is simultaneously mission critical and more than a little revolutionary.

About M. Maxwell Stroud
M. Maxwell Stroud, MSW MSW is a Lead Consultant at Galen Healthcare Solutions with a professional background in both healthcare and social work. Max has been consulting in Health IT for over 8 years.  She has worked with every aspect of health IT in ambulatory care including facilitating clinics through the transition from paper to electronic formats, supporting teams through major system-wide upgrades as well as add-on implementations and integration projects.       Max has a passion for collaborative process and building processes that bring all stakeholders to the table to build systems that meet the needs of the business organization, the providers and the patients.  Max can be found on Twitter at @MMaxwellStroud