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Not collected? Not studied.

By Advocate, Caregiver, Clinician, Consumer, ePatient, Informaticist, Researcher

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?

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Secretary General of Your Health Team

By Advocate, Consumer, ePatient, Family man, Leader

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?

Better Clinician Experience, better #PtExp erience

By Advocate, Clinician, ePatient

I attended a meeting last week of Mass Health (Massachusetts Medicaid)’s Payment and Care Delivery Quality Improvement Work Group (a mouthful).  The main topic: patient experience. Measuring #ptexp is critical and challenging. There’s no best way to measure, and it’s quite expensive. Who loves to fill out surveys? I do when I’m seriously delighted or completely pissed off.  Mostly I couldn’t be bothered.  It’s time-consuming, especially when I’ve been to my many specialists in a short period and get surveys from each. The questions are usually difficult to answer. They ask specific questions about similar events over time. Do they want to know about the last visit, or all the visits in the past three months? The questions often don’t ask about what’s important to me. I fill out the survey and I wonder, what will they do with this?  Will anything improve?  Will the doctor or nurse have more time with me?  Will they look at me or the computer screen?  Can I bill them for my time? My doctors know that I write about your experience (the experience of the people at the center of care).  They tell me about their frustrations with their jobs. They talk most often about administrative tasks – the electronic health record and having so little time with each individual. Read More

Driving our health journey – writing the story

By Advocate, Caregiver, Consumer, ePatient, Informaticist
For individuals to drive their own health journey we must have the key to the ignition, be in control of the accelerator, the brakes, the steering wheel, and be able to see the full dashboard of cues about ourselves. At the same time we need to control access of passengers, be able to give the keys to whoever we choose, deny access to whomever we choose, and trust those who take the wheel for us.
We also need to be able to read, share, and correct the story about our journey. We need to contribute our chapters – our destinations (goals), our lists, our tracking, our feelings. If we want to, we need to be able to ask others to contribute chapters. We need an eBook version of our story that we can edit and share portions we choose with anyone we give permission to read it. With many people and reports about us, contributing to our book, chances are some of it will be wrong. Wrong person, wrong time, wrong diagnosis, wrong, wrong. We are the only common denominator of our story. We need a way to correct the errors we find. Our lives could depend on it. We are the single source of truth about our story.
I love puzzles: This is the puzzle of many lifetimes! I’m driven to contribute to solving some of this puzzle. Last week based on a recommendation of a fellow member of the Society for Participatory Medicine, Adrian Gropper, I joined a group, OpenID-Heart.
The HEART Working Group intends to harmonize and develop a set of privacy and security specifications that enable an individual to control the authorization of access to RESTful health-related data sharing APIs, and to facilitate the development of interoperable implementations of these specifications by others 
What does this mean?  Many people and interests throughout the world are working on solving the puzzle of privacy, security, and health data sharing. An API makes it possible for computer programs to talk to each other and share data. REST means that the API can expose something the software does while protecting other parts of the application. Health data is big business and very personal. The voice of the people at the center of care is critical.  I attended my first weekly hour-long meeting. While much of it was technical and over my head, I joined because someone asked about patient goals. I’ve never heard techie’s speaking about patient goals. To me that’s, What am I, are we, trying to accomplish on my health journey?  Certainly end-of-life choices is one, but more often it’s less pain, less fear, more fun, managing my meds, hanging with friends and family, fitting in my clothes, getting to work, getting to the doctor, having love in my life. I think I’ve died and gone to heaven.  I’ll keep you posted.


Fitting data into life’s flow- a vexing dilemma

By Caregiver, Clinician, Consumer, ePatient, Informaticist, Leader

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.

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What is Health Data? An Introduction for Anyone

By Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist, Leader
I took a week off.  I unplugged to attend the memorial service for my mom. Thanks to readers who inquired about my absence, worried if I was OK.  I’m OK.

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 or @healthhats.

Health data takes a pulse, tells a story, reviews a life, describes a group of people, and links cost to that health journey.

The pulse, represents the natural, and un-natural, changes a body experiences  – higher blood pressure, lower blood pressure; more weight, less weight; happier, sadder; steadier, shakier, pain, fear, anxiety, relief, feeling respected or alone – on and on. Some pulses are felt, seen, heard, sensed, smelled, timed, and some are electronic (lab tests, x-rays, apps etc.).  The most common form of pulse data is the list, a continual pulse over time: medications taken or not taken, minutes or hours of activity, wounds cared for, mood changes… The list can be in your memory, on scraps of paper, in a spreadsheet, on an app, in an Electronic or Personal Health Record, anywhere. People in your team, including you, take different pulses. Most different is that yours are often felt from the inside out, while everyone else’s is from the outside in. This inside/out business is really important. You are the only one who takes pulses from the inside. You are the only one who experiences what you experience. However, it’s all data about the same thing – you.

Get to here from there – lessons from a teenager

By Advocate, Caregiver, ePatient, Leader
I was 17, hitchhiking through Europe, found myself lost, hiking alone through the Rondane Mountain Range. A rookie mistake. I’m geographically challenged, I’d been warned not walk by myself. I had a map, a compass, some food and water, and no sense. I was hiking a trail from one hikers’ chalet to another.  Mountains were giant mounds of boulder rubble from glacier melt.  The trail was marked by big red T’s painted on rocks. With my infinite wisdom I decided to follow a stream below the trail markings.  Naturally, I got lost, couldn’t find the trail. Compass and map were useless to me. That night I wrote a letter to my girlfriend, If you get this I probably didn’t make it. I’m such an idiot. The next morning I woke up, made a little ramen breakfast and headed toward the stream to wash up and fell over a rock – with a big red T on it.  I stood on the rock and looked until I saw the next big red T, went to that one and so on and so on.

big red T
Today, I’m challenged and energized by large change projects in health care – Researching, selecting, and implementing an electronic health record,  designing and creating an outcomes management system, advocating for people at the center of care.  Now that I’m seasoned I know that massive change projects require equal measures of sense and standing on a big red T, looking for the next one, going there, and on and on.

EHR Access for the Family Caregiver

By Advocate, Caregiver, Consumer, ePatient, Informaticist

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:

    1. Common goals for the health journey developed with the person at the center, known by the entire health team
    2. Plans to attain those goals
    3. Current medications, schedule of taking, how they affect the taker
    4. History of medications, what worked and what didn’t
    5. Members of the health team, professional and lay people, how to reach them and the ability to reach them
    6. Schedule of events past and future – procedures, hospitalizations, diagnoses, appointments
    7. 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!!!

Photo by rawpixel on Unsplash

Finding a New Doctor, Oh My! Part 1

By Clinician, Consumer, ePatient
My neurologist has moved away. I’m grieving. Granted he was a curmudgeon with mixed bedside manner. But we were very compatible. He was always available (email return within 24 hrs), he answered my questions, asked if I had any more, educated me, reassured me, and understood my life goals. The electronic medical record was state of the art, meaning only fair. He didn’t use the Open Notes feature (remember curmudgeon). The team of nurse, assistant, and physical therapist were also characters, but competent and has each gone the extra mile for me. Since my job changed it’s been way less convenient for me to go to his office. So now that he’s leaving, I’m reluctant to start with a new doctor in the same practice. How to choose? First I thought of going to a neurologist close by in the hospital my wife works in, but he’s a solo practitioner and not part of their MS team. My departing neurologist recommends one practice, I’m curious about another, Unfortunately, our insurance, from my wife’s employer, has both the MS practices I’m interested in on a Tier 3 – much more expensive. $150/visit versus $35. Money is certainly not my first  consideration-we’re doing OK financially, unlike many. How important is the recommendation I received from the departing neurologist? He disses several doctors that I like (again curmudgeon). I want a full MS clinic with other specialists who talk to each other and work together in case/when my MS progresses. I want physical and occupational therapists who know MS. I’m a nurse, I want nurses who know me and know MS. You get the drift. I want a place with an evolving improving electronic health record. I want commitments about response times. I want people who will partner with me and listen to me while giving it to me straight. My previous neurologist once emailed me back, “Oh, get over it.” Another time, “this is new, I can see you tomorrow.” (curmudgeon). I will check out the prospective doc on my first visit. How much does she listen? What kind of coverage is there? I’ve tried to ask about the clinic on but no takers. I’m trying to find nurses who might know the nurses at the clinics. We’ll see. I’ll keep you posted. Having an ace team is everything. Losing a member is tough.

What do I Need Electronically to Work With My Health Team?

By Advocate, Caregiver, Clinician, Consumer, ePatient, Leader
What do I need (must have) electronically to help me work with my health team?

  1. All team members (including me) operate off the same data set. This means that we know and agree what are the most important pieces of information about me (the minimum data set).
  2. That these pieces of information are collected somewhere, shared, merged, updated and corrected easily as needed.
  3. My health goals and plans to get there are explicitly stated.
  4. Able to track my progress to those goals.
  5. A safe, reliable way to communicate with my team members and my team members to communicate with me that works for me.
  6. A safe reliable way for team members to communicate with each other that gets recorded for me to see.
  7. Able to read, print, and transmit this information anywhere, especially somewhere unexpected outside my usual network-like an Emergency Room.
  8. Able to view notes my team members write about me.

What would I like to have?

  1. A description of how I react to pain and guidance for what works and doesn’t work to relieve pain for me.
  2. A description of how I react when scared and guidance for what works and doesn’t work to calm me down.
  3. Access to recommended places to get more information.
  4. Able to write notes with other team members or write notes myself that other team members can see.
None of these needs and likes are fully available now in spite of many years of effort and money spent on electronic records. The most progress has been made on #1 same data set, #6 safe, reliable communication, #7 read, print, transmit info, and #8 view notes. Many of these items are not even in the realm of discussion. Members of health team still mostly means doctors, nurses, and other acute care medical professionals, not community health or behavioral health providers. Still beating the drum for these magic levers of best health.