Personal Medical Recordkeeping for Rare Disease Patients

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This blog is another opportunity to feel grateful and thank you dear Universe: You continue to bless me with recovery and overall health.  

“Not keeping life-changing health-related documents in a synchronized format is a big risk, advised a senior doctor after seeing the way I maintained my medical records. A personal medical record is key to managing one’s health information and involves keeping detailed track of one’s medical history, diagnostic test results, medications, clinical observations, and current health status. My struggle with keeping my medical records well-ordered taught me crucial lessons in recordkeeping, which I feel can be a useful tip for anyone going through something similar.

Many patients underestimate the importance of medical record management or view this process as a matter of convenience, not prioritizing and agreeing to, the importance of it. It helps one to organize important information in the form of an electronic document and systematically manage records throughout lifetime, from creation to disposition.

I often ran into complicated situations when coordinating consultations with my doctors, having to carry a huge bag of medical reports containing updates on the diseases I was diagnosed with – Isaacs’ Syndrome, Membranous Glomerulonephritis, Lyme Disease, and Glaucoma. I had to carry the details of diverse symptoms and the various prescriptions that spelled and dictated a dose of 42 pills spread throughout the day.

Initially, I felt managing records was more of a science than simply an act of discipline.

I did not expect any help from family members in managing my health records as nobody had any prior experience in dealing with such a situation. Fortunately, one fine afternoon I happened to see a spreadsheet from my investment banking days that I had prepared for maintaining client details, and that gave me an idea for maintaining my health details. Even so, it took me weeks to synchronize all the data, starting from my diagnoses, and tabulate the following information:

  • Date
  • Attending doctor’s name and expertise
  • Description/ Symptoms on that day
  • List of previously prescribed medicines
  • Attending doctors’ comments
  • Prescribed actions
  • Notes, including details of anything to bring to the doctor’s attention (e.g., allopathic, ayurvedic, and homeopathic medicines, questions regarding any new findings, etc.)

Undertaking this effort made my interactions with the doctors more effective by enabling me to gather in one place all important facts pertaining to my past and present medical condition. Importantly, the information was collected accurately, but with minimum effort. Keeping a digital record also eliminated the headache of dealing with stacks of paper files, eased retrieving and disposing information, and aided setting reminders easily for follow-ups with the various doctors.

Further, it ensured an increased transparency between consulting physicians and being prescribed medication, and simplified decision-making during emergency situations. Again, some doctors in larger hospitals often receive reports directly from the concerned diagnostic departments. However, this is not commonly the case and patients have to fill in gaps at times. The recordkeeping, most vitally, allowed me to share information and keep everyone concerned on the same page avoiding duplication of efforts. I also found that the improved quality of my medical stats motivated me to do better. It ensured that all the information was in one place, the report of the previous treatment helped maintain the continuity of my treatment and created a bank of evidence of the care received. Lastly, it also made my family members more open to disclosing hereditary risks, which helped all of us.

Putting in place the right recordkeeping tools can make the entire patient care system from diagnosis, control, and recovery more effective. Seeing the improvements I brought about, my parents too adopted a similarly disciplined approach to maintaining their medical records and realized its benefits. A popular adage reads, “when disaster strikes, the time to prepare has passed.” I may have gotten lucky in innovating a previously known technique to solve a new problem, but another person may require an understanding of the level of the organization before implementing such a recordkeeping situation. As I found, using digital tools can go a long way in easing worries about losing important records and reports.  


The views expressed in this article are the author’s own and do not represent any kind of medical advice.

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