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As the “ePatient movement” gains its voice, I hear a quiet echo…

December 10, 2015
By Christina Lizaso (@btrfly12)
Christina-Lizaso-150x150As the e-patient movement gains steam, I keep hearing a small voice behind me saying “But why does it have to be this hard? What responsibility falls back on those providing care to help patients navigate the broken system? What is the provider’s responsibility to take action now to improve their own care delivery and fix the healthcare system at large?

As things currently stand, the patient or someone on their behalf needs to be that patient’s advocate and actively participate in the care plan. Absent this, things can go very bad, very quickly. So when patients and families are in the midst of a crisis and not at their best, they are compelled to become researchers, negotiators, scribes and more.

Take my mom. She is a cancer survivor, cared for my dad through cancer and a stroke, and now cares for her elderly husband. She estimates 50-60 percent of her waking hours are now dedicated to being the healthcare CEO of her own and her husband’s health. Her health record keeping alone includes: a one-page sheet for each doctor’s visit upon which she takes notes (on her copy) and then types up following the meeting, a two page health summary with all contact information for her and for her husband that is regularly updated and kept on her person at all times, and a spreadsheet with a tab detailing discontinued treatments and a tab detailing each “major health event”. She spends at least an hour preparing for each doctor’s appointment and then spends time after documenting. She keeps up with this labor intensive system because she has seen what happens when she doesn’t have her own system. She has also learned a lot about when and how to speak up.

What percent of patients have an educated, experienced caregiver who can spend as much time as needed advocating for them?

To manage – physically and emotionally – patients and families seek out each other in digital patient communities where they share tips and tricks for navigating the system and the impacts of disease. As feelings of isolation subside and stories are shared, patients and families do become more educated, equipped and empowered. And it has been good to see that more organizations are seeing the need to help empower more people in their health.

Yet there are plenty of stories of those who know the system – those who would consider themselves empowered – and still run into hurdles they can’t overcome.

HCSMCA 12.16.2015 (1)

The need for active, unwavering engagement is the reality, but how heavy a burden is this? What can be done differently? Done better? And what role do health systems have to play for those who can’t or don’t want to be “ePatients”?

So yes, let’s collaborate, partner, and have shared decision making for those who desire it – be people in this process – but let’s also figure out how to lighten the load in the first place.

Guiding our discussion on Wednesday, December 16 at 1pm ET (time zone converter) lets ask:

  • T1: What prevents patients from being empowered in their health?
  • T2: What responsibility falls back on those providing care to help patients navigate the broken system?
  • T3: Empowerment can only take healthcare so far. How can “ePatients” be better utilized to improve the systems?
  • T3b: How can social tools support utilizing patient input? What can healthcare do better w/ a population of ePatients?
  • T4: How might people who can’t or don’t want to be “ePatients” be supported? And by whom? The system, providers, patient peers
Author’s note:
I am deeply honored to be hosting a #hcsmca chat. In 2011, Colleen was the very first person that I ever interacted with on twitter. By following her after that interaction, I learned about the power of twitter chats. Later, with #hcsmca as an amazing example, I co-founded the #gyncsm community and today I also moderate #patientchat. My twitter world has come full circle and I am indebted to Colleen and to the #hcsmca community.
Related Reading:

Here’s how patients can take a larger part in their own care by Suzanne Allard Levingston, The Washington Post

From patient centered to people powered: autonomy on the rise by @ePatientDave

Why We Don’t Want to Be Our Own Patient Advocates by Barbara Jacoby, @letlifehappen


Is being an ePatient sometimes a disadvantage? by Michael Seres, @mjseres

My Mother’s Scrap of Paper by Linda Stotsky, @EMRAnswers

A Doctor at His Daughter’s Hospital Bed

10 Comments leave one →
  1. December 10, 2015 2:19 pm

    great subject Christina. Hope to join in the on the conversation. I’m sure outside these excellent points I’ll learn so much from your perspective. I’m putting the date and time in my phone now.

    Liked by 1 person

    • December 11, 2015 9:56 am

      Thanks Nikki. The thoughts had been rummaging around in my brain for a while and it was good to get them down on paper. So nice to see others have interest in the topic as well.

      Liked by 2 people

  2. Sally permalink
    December 15, 2015 5:14 am

    Great questions. When I first heard of the ePatient movement I assumed the “e” stood for “electronic” rather than “empowered”. Luckily that works just as well, because I gave a presentation at the QUB ePatient conference in September and only discovered the meaning of the letter “e” a few days before the event!

    Anyway, I shared a bit of my story and a few strong opinions on the the need for patients to help one another, and if you like, you can check out the video I produced for the event here:

    I hope to be able to join your Twitter chat tomorrow, and if not i’ll check the tag later.
    Best wishes,
    Sally (@keelatoo)

    Liked by 1 person

  3. December 15, 2015 10:14 am

    I just came across this article today Helicopter parenting at the doctor’s office may impact teen health

    Are we teaching our children about the important of personal health advocacy? Is patient empowerment is skill that needs to be taught?


    • December 15, 2015 12:43 pm

      I’ve been thinking about this as my kids are 6 and almost 8. I have taken them with me to a few of my appointments. Before my daughter’s 6 year old check up I asked her if there was anything she wanted to ask the doctor. During the appointment we got whirled through and her question quickly glossed over. I told my daughter after that we should find her a doctor who will listen to our questions and take time with us. Now I need to model as well as my primary care office not really patient-centric.


    • December 15, 2015 12:47 pm

      Health literacy is a key missing ingredient that needs to become part of schools’ curriculum.


  4. Emma Rooney permalink
    December 16, 2015 8:07 am

    Thanks for sharing the readings. I appreciate each of them in different ways.


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