I have secondary progressive multiple sclerosis. Today, I have a primary care physician in one health system, and four specialists in three other health systems (each has unique ownership, medical record, and patient portal). I use two retail pharmacies, one specialty pharmacy, and three lab services. I also see an acupuncturist, chiropractor, physical therapist, and massage therapist. I use two durable medical equipment companies. These services almost exclusively communicate through me (or fax – my grandsons don’t know what a fax is). My personal team is my wife, two adult sons, their spouses, and a sister. I have to give them my sign in and password to access the portals. I use a spreadsheet, and three apps to track stuff. I don’t have the patience for the work of building my personal health record in an app. I have no idea what happens to my data in PatientsLikeMe and other businesses. I’d like to give authorization when I think it’s right and track who’s using what, but I can’t. I’m doing OK, thanks for asking. Read More
This third in a series about health care data thinks about how data fits into the life flow of people. We collect data because we want to, need to, or are forced to. People observe their own health journey (life) and remember stuff: How I feel, how much I weigh, how much I eat, how far I go, how much pain I’m in, when I have to be somewhere, what it takes to get there, how much I spent or owe…. We may write it on a piece of paper, on a list, on a form or type it into something, or a machine captures, stores it and may display it or print it out.
This is the second in a series of posts about Health Data, Health Information, and Health Wisdom. The first in the series can be found here. This is my 170th post. I starting in July 2012. I have over 2 thousand readers reading this blog as subscribers and in Twitter, Facebook, and LinkedIn from many walks of life and experiences with health care. Many wear more than one hat. Most are patients, some are family and friend caregivers, some are professionals and caregivers by trade, and some work in health technology. This series of posts is geared to everyone. I delight in trying to write for everyone. Considering health literacy while writing helps me organize and clarify my thoughts. I welcome comments and suggestions. Please send them to me at email@example.com or @healthhats.
1) Coordinating care – All of my health team has the same information to share amongst each other – primary care to specialist, specialist to specialist, specialist to primary care, and all to my lay care team (relevant history, allergies, medications, procedures, diagnostic study results, impressions, diagnoses, unresolved dilemmas, next steps).
Seldom do the underlined items exist in even the best EMRs, never are they retrievable by me or my health care team. This isn’t good enough.
1) the scenarios in your experience where medical record content was critical to care
2) the data set (information) the record should contain in those scenarios.