Give Me My Damn Data

Making decisions about my best health requires information, wisdom, faith,and luck. Information comes from data, observation, and communication. Wisdom comes from experience and reflection. Faith is trust. And there’s a crap shoot in choices, who knows. For me health care decisions is a team sport, best done when I’ve been able to hand-pick my team – professionals and loved ones. Necessary to my decisions is access to my medical record. Access to my medical record by itself is like drinking water of unknown quality from multiple fire hoses. I have at least ten medical records, seven of them electronic. My primary care, neurology, ophthalmology, neuro-ophthalmology, cardiology, and urology records all electronic and on different systems. My massage, acupuncture, and chiropractic records, all paper. Not to mention my electronic Personal Health Record on Microsoft HealthVault that I use to try to consolidate them all.  I have a chronic illness but I function well. I’ve never been an inpatient. Are you dizzy yet. My periodic, episodic decisions are somewhat based on the data in the records, but more on knowing my nonnegotiables (e.g., nothing that makes me depressed) and having faith in my professional health team. I worry about two scenarios related to my medical record:  1) I want all of my health team to have the same information to share among each other – primary care to specialist, specialist to specialist, and specialist to primary care (relevant history, allergies, medications, procedures, diagnostic study results, impressions, diagnoses, unresolved dilemmas, next steps). Now I have to compile it to share. 2) I want the information readily accessible to whoever takes care of me in an unexpected situation when I can’t fully communicate for myself like when I fell, had a concussion, and went by ambulance to the ER (Current medications and medications that didn’t work, allergies, doctors, procedures, relevant history, recent diagnostics studies, ability to communicate, ability to learn, caregivers, typical reaction to pain and the unknown, what works to relieve pain, inform, and calm, and cultural and spiritual needs). Ideally, I would have a health partner with me to help, but I might not – luck.

In the face of this quagmire, I marvel that some providers question whether I should have real-time, unfiltered access to my medical record.  If I don’t, who will? They don’t. Nobody has unfiltered, real-time access to my complete record. Decision-making is a minefield of insufficient information, wisdom, sensitivity,or trust with awkward emotion and  bad luck. Access to real-time, unfiltered information is necessary to decision-making, but insufficient. Give me my damn data.

Comments

Give Me My Damn Data — 3 Comments

  1. This is quite true. Imagine what people who don’t have the where with all do. It reminds me of a quote from Hillel the Elder of Babylon ”
    If I am not for myself, then who will be for me? When I am only for myself, then what am “I”? And if not now, when?”

      • the answer to this global problem that threatens modern medicine lies in the famous words “physician heal thyself” and the much more recent concept of ‘people power’. Physicians know that all current EPR and EHR ‘suck’ and there are many now working on a solution that once unleashed will proliferate through patient and physician advocacy. 2013 is the launch so I hope you won’t have long to wait.

Talk to me