I love my health team. They help me stay tuned up with my chronic challenges and they get me through unexpected crises. Still, I see them way too often. 3-5 times a month and I’ve never been an inpatient. Professional contact is a drop in the pond of my health. The rest of the time (also known as my life) I set and track goals and habit changes. I have questions about my plans and treatments. I deal with changes in my life that affect my ability to do the work of habit change. I network and I research. I worry and I celebrate. I have tools to help me that are largely disconnected from my health team. I track steps with my iPhone, my diet with MyFitnessPal, the support communities of MyTreatment and PatientsLikeMe. I can communicate with some professionals via portals and can receive one way data via OpenNotes, also with some professionals. Read More
What do people consider to be clinical data, when they’re not wearing the hat of clinician, academic, researcher, insurer or EHR vendor? We can all agree that pulse, weight, diagnosis, procedure, medication are all clinical data. But what about data that answers questions like:
- What does feeling worse (or better) look like?
- What works for me when I’m in pain (or scared)?
- Where will I sleep tonight?
- Are my kids safe? Am I?
- Am I treated with respect?
- Do I understand what doctors and nurses say to me?
- Where do I go when I have a question or I forget what I’ve been told?
- How do I get food from the grocery store?
- How much can I afford out-of-pocket for my medicine?
- What are the most important things in my life, for my future, for my health?
- Can I live with this amount of pain or discomfort or indignity?
- Do I have access to a computer or a phone?
I want to be a good leader of my healthcare team. How would I know? Such a swirl of activity. This week my ophthalmologist wanted to refer to me another ophthalmologist. She said she’d email her to introduce me, send over my records, and have her scheduler arrange the appointment. I’ll follow-up if I don’t hear from the scheduler in a week. My chiropractor wants to hear what the massage therapist and physical therapist recommends and aligns his plan with theirs. My neurology nurse practitioner called me to say that the insurance company won’t cover the brand name injection I’ve taken for years because there’s a new generic medication. She doesn’t think it’s been tested enough on people before FDA approval. Instead she will prescribe a different dose of the brand name drug instead that’s still covered. Is that OK with me?
My healthcare team is like no other team in my life – not like family, not like business teams. It feels like a team in the clouds. They never gather together as a team. If they communicate at all it’s through me, or emails and snail mail reports, or if they’re in the same system through the electronic health record. I can think of once in 7 years that any clinician spoke to each other directly: my primary care doc called the neurologist when I fell and sustained a concussion. My wife has attended a couple of doctor appointments with me when I was first diagnosed with MS. Several times a year a prescriber speaks with a pharmacy or medical supply company to clarify an order. My family likes to stay current about my treatments, risks, appointments, and stress. They talk with me and among themselves.
Who is my team? Me, my wife, my sons and their families, my sister, my doctors and their teams, other clinicians (massage therapist, chiropractor, acupuncturist, physical therapist, optometrist, optician, pharmacist), medical supply companies, insurance company. I’m fortunate. I’m a good e-patient and I’m a clinician myself. I’ve selected this team (except the insurance and pharmacy benefit companies). One of my best barometers of team effectiveness is usually how the team operates when the leader isn’t in the room. Do they work better when she’s present or absent? Do the team members treat each other with respect? Is communication open? Are they clear about accountability, do they meet their commitments? But in healthcare there are so many other factors and power dynamics between clinicians, office staff, caregivers, insurance companies, administrators. It’s crazy complex – like being Secretary General of your health team. I wonder what Ban Ki-moon would advise?
Several readers commented about the disruption of revolving door members of their professional health team – those leaving a practice, with or without notice. One asked, why can’t organizations keep compassionate people-centered professionals? A good question. It takes time and effort as an e-patient to develop good relationships with professionals. When my clinicians have moved on, I am greatly stressed and my health is challenged. I was at a meeting recently of the Lown Institute, a predominantly physician group of burnt out or burning out docs committed to people-centered care. The main beef seemed to be with administrative burden / electronic record edging out face-to-face time between people and clinicians. Read More
Why don’t I know when someone, something, anyone accesses my personal health data? I get emails from Apple, Google, my banks, credit cards, Facebook when someone attempts to get access to my financial or social media accounts from a different computer or browser than one I’ve authorized. My bank proactively let’s me know when they suspect fraudulent charges. But I have no idea when someone opens, adds to, corrects, uses, sells my health data. I’m pretty much an open book, even pathologically open. After all, I blog about anything. I still would like to know who’s using my health data. If I knew I may be less open. I may still not care. I know data is big, big business. Social media data, Amazon data, health data. It can’t be because it’s not technically possible or too complex. I don’t think I want to interfere with that big business (why try?), but it doesn’t interfere for Facebook or my bank to keep me posted, so why would it interfere for my health data. If the federal government is paying billions to support the electronic health data business through meaningful use incentives, why don’t they require that we be notified of our health data use? Health data sources (hospitals, insurance companies, researchers, etc) spend millions if not billions to prevent hacking, yet hacking occurs regularly. More than 30 million records hacked a year! It takes a long time for companies to discover hacking – often not until thousands of files are hacked. Seems like I could identify health data hacks sooner and then tell the entity that’s hacked.. Wouldn’t I be flooded with notices every time I went to the doctor or went in the hospital? Not if I could authorize access and permission and even assign other people, clinicians, and hospitals to authorize on my behalf. My authorizations could be stored on a server accessible to me and accessible to those wanting to exchange my data. I could go to it to track authorization, change what I allow to whom. What would take for government and industry to want to accomplish this? Is there a threshold of hacking or fines? When I review the literature, little discussion occurs beyond better encryption, more rigid password protection. Why not? Does this matter to you?
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 firstname.lastname@example.org or @healthhats.
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. Gives your data!!!