My medication lists don’t match and none of them reflect what I actually take. I have received doctor visit print-outs and seen on-line summaries in five doctor offices and two infusion centers in the past year. Each place does some sort of reconciliation at each visit. In one, a medical technician asks me what I’m taking while looking at the screen, making changes. I say I don’t take that anymore. That one’s as needed, but I haven’t taken it since my last relapse. That was stopped years ago and taken off twice before, etc. The doctor reviews the resulting list. When I check the portal after the visit, some changes aren’t reflected. Other offices print out a list and ask me to write changes and return the list. The lists don’t reflect the changes I made last time. No surprise – the portals don’t reflect any of the changes. Another asks me while looking at the EHR, this compounded medication isn’t on our list, we’ll leave the non-compounded version (a doctor in their system prescribed the change and directed me to a pharmacy to have it filled). One doesn’t allow my twice-a-year infusion to be listed as such (only allows the number of times a day). I have a moderately simple medication regime taking 4-5 prescribed pills and salves, twice-a-year infusions, plus 3-4 over the counter medications with three as-needed (PRN) meds. I use two local pharmacies, a mail-order pharmacy, and a compounding pharmacy, depending on which has the lowest out-of-pocket cost. I’ve never had an inpatient hospitalization. Read More
I am on a health journey, trying to meet my health goals with the support of a care team. Who’s doing what? When are they doing it? That’s my plan of care for me.
Most people don’t normally think in terms of a plan of care for themselves. Let’s peek into their minds:
Plan of Care – What’s Going on in Their Minds?
Patient: What’s wrong with me? Should I tell the doctor? What does she want me to do? Can I afford it? Does it (will it) hurt? Can I (will I) still be able to take care of my family (go to work, go out, have fun)? What happens next? How’m I doing now? Did the med (the procedure, the diet…) work? Did it help me? What should I worry about? What should I do if it happens (again)?
Clinician: What’s on his mind? What’s wrong with him? What should I do next? What did I prescribe before? Did he do it, did he take it? Will he tell me the truth? If he did it, did it work? What do the tests tell me? What should I prescribe next? What are other doctors doing (ordering)? Has he been to the hospital since I saw him last?
Questions, questions, questions. So many bumps in the road and detours in the health journey. Few maps, spotty GPS at best. Read More
My primary care doc’s medical technician came in to take my vital signs, “I’m Frank. I’m new to Dr. Z’s team.” “Hi, I’m Danny,” I replied. “Dr. Z’s on my health team. Welcome to the team.” Big smile from Frank, “Hmm, I never heard that one before.”
My PCP and neurologist get a kick out of me and my engagement in my health. I get the feeling I’m unusual, but I’ve never asked. We have a relationship and a communication style that works for us. But what if it doesn’t? Read More
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
We’re looking at technology that can help the primary caregiver support someone’s health journey. Access to the electronic health record (EHR) impacts seven of the fifteen needs described in a previous post:
- Common goals for the health journey developed with the person at the center, known by the entire health team
- Plans to attain those goals
- Current medications, schedule of taking, how they affect the taker
- History of medications, what worked and what didn’t
- Members of the health team, professional and lay people, how to reach them and the ability to reach them
- Schedule of events past and future – procedures, hospitalizations, diagnoses, appointments
- The same information in the hands of the entire team including the people at the center that they can understand
How can family caregivers access electronic health information of the person they support? Today, I’m with my 87-year old mother. I had her show me the portal she uses at the system where she gets most of her medical care. She wants me to have access to her medical record and wants me to be able to communicate with her doctors as she does. However, the site clearly says that unless the patient is a child under 11 years old that she can’t give me my own access to her account for technical and privacy reasons. So she gave me her login and password. This lack of direct access for primary caregivers is the norm. It’s NOT a privacy issue if the person give permission. It’s a technical issue that has long been solved by Children’s Hospitals trying to give access, some full access, some limited access, to parents and guardians of teens and children with blended and disputing parents. Rather it’s a matter of will and priorities. Some independent electronic health records, such as Practice Fusion, have mechanisms for primary caregivers to be granted access with permission. Also those health systems involved in the OpenNotes initiative – Beth Israel in Boston, Geisinger, Harborview in Seattle, are exploring giving primary caregivers access to physicians’ progress notes. Give us our data!!