Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

OpenNotes and whether patients should see their medical notes

Dave deBronkart
Patient
August 21, 2010
Share
Tweet
Share

The opening anecdote of the e-patient white paper tells of a patient who impersonated a doctor in 1994, to get his hands on an article about an operation he was about to have. He got busted. Two years later episode 139 of Seinfeld had something similar – Kramer impersonates a doctor to try to get Elaine’s medical record.

It aired October 17, 1996. It was a turning point in American healthcare: eight weeks earlier the Health Insurance Portability and Accountability Act (HIPAA) had been signed into law, but the full regulations had not yet been written, so when this aired Elaine did not have a legal right to look at her record.

Today she does, but it’s often difficult. Plus, HIPAA regulations allow 30-60 days for providers to deliver, and states can set whatever price they want for the copies. But at least there’s a legal right.

Now, the Robert Wood Johnson Foundation (RWJF) is funding a study called OpenNotes to explore taking it a big step further: what happens if patients can see, online, every last bit of what their doctors wrote? Do doctors get overwhelmed with questions? Do patients freak out when they read the medical words that doctors write? Does the world go to hell in a handbasket, as some have worried aloud?

A year ago the Boston Globe voiced those concerns in the lead of an article announcing OpenNotes. Shades of Elaine:

One doctor wrote that a patient was acting paranoid. Another typed that she had ordered tests to make sure a patient didn’t have cancer. Such notes, written in a patient’s medical records after an appointment, can be candid and blunt – at times more so than doctors are to patients face-to-face.

Amid the national push to computerize medical records and make them more open to patients, one of the most intense areas of debate is whether patients should be allowed to see their doctors’ notes online.

It’s taken a year but recently, OpenNotes went live. The press release starts:

With patients across the country voicing a growing desire for greater engagement in and control over their medical care, a new study involving patients in Boston, Pennsylvania and Seattle will examine the impact of adding a new layer of openness to a traditionally one-sided element of the doctor-patient relationship—the notes that doctors record during and after patients’ visits.

Funded through a $1.4 million grant from the Robert Wood Johnson Foundation (RWJF) Pioneer Portfolio—which supports innovative ideas and projects that may lead to important breakthroughs in health and health care—the 12-month OpenNotes© project will evaluate the impact on both patients and physicians of sharing, through online medical record portals, the comments and observations made by physicians after each patient encounter. Approximately 100 primary care physicians and 25,000 patients at Beth Israel Deaconess Medical Center (BIDMC) in Boston, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Seattle will participate in the 12-month trial.

Beth Israel Deaconess? Why, that’s the hospital where I see my primary Dr. Danny Sands! Not surprisingly, he volunteered to be one of the 100 doctors, and I volunteered to be one of the 25,000 patients.

I spoke about the project with RWJF’s Steve Downs. My view has always been that of course I should be able to see my records: whose data is it, anyway? But Steve points out, correctly, that you can’t shove culture change down people’s throats, so RWJF is spending big bucks to collect evidence.

To the credit of everyone involved, they’re allowing us participants to blog and chat about our participation: “Somebody might come up with good uses for the notes that we haven’t anticipated.” Hallelujah; that’s Web 2.0 / participatory thinking.

ADVERTISEMENT

Dave deBronkart, also known as e-Patient Dave, blogs at e-Patients.net and is the author of Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer and Let Patients Help!

Prev

The public option dissonance in health reform

August 20, 2010 Kevin 12
…
Next

Pay cuts for government health care subsidies

August 21, 2010 Kevin 2
…

Tagged as: Health IT, Patients

Post navigation

< Previous Post
The public option dissonance in health reform
Next Post >
Pay cuts for government health care subsidies

ADVERTISEMENT

More by Dave deBronkart

  • Googling is a sign of an engaged patient

    Dave deBronkart
  • a desk with keyboard and ipad with the kevinmd logo

    Women’s right to vote and the e-patient movement

    Dave deBronkart
  • a desk with keyboard and ipad with the kevinmd logo

    Does shared decision making really increase health costs?

    Dave deBronkart

More in Patient

  • AI’s role in streamlining colorectal cancer screening [PODCAST]

    The Podcast by KevinMD
  • There’s no one to drive your patient home

    Denise Reich
  • Dying is a selfish business

    Nancie Wiseman Attwater
  • A story of a good death

    Carol Ewig
  • We are warriors: doctors and patients

    Michele Luckenbaugh
  • Patient care is not a spectator sport

    Jim Sholler
  • Most Popular

  • Past Week

    • Forced voicemail and diagnosis codes are endangering patient access to medications

      Arthur Lazarus, MD, MBA | Meds
    • How President Biden’s cognitive health shapes political and legal trust

      Muhamad Aly Rifai, MD | Conditions
    • The One Big Beautiful Bill and the fragile heart of rural health care

      Holland Haynie, MD | Policy
    • America’s ER crisis: Why the system is collapsing from within

      Kristen Cline, BSN, RN | Conditions
    • Why timing, not surgery, determines patient survival

      Michael Karch, MD | Conditions
    • How early meetings and after-hours events penalize physician-mothers

      Samira Jeimy, MD, PhD and Menaka Pai, MD | Physician
  • Past 6 Months

    • Forced voicemail and diagnosis codes are endangering patient access to medications

      Arthur Lazarus, MD, MBA | Meds
    • How President Biden’s cognitive health shapes political and legal trust

      Muhamad Aly Rifai, MD | Conditions
    • Why are medical students turning away from primary care? [PODCAST]

      The Podcast by KevinMD | Podcast
    • The One Big Beautiful Bill and the fragile heart of rural health care

      Holland Haynie, MD | Policy
    • Why “do no harm” might be harming modern medicine

      Sabooh S. Mubbashar, MD | Physician
    • The hidden health risks in the One Big Beautiful Bill Act

      Trevor Lyford, MPH | Policy
  • Recent Posts

    • Beyond burnout: Understanding the triangle of exhaustion [PODCAST]

      The Podcast by KevinMD | Podcast
    • Facing terminal cancer as a doctor and mother

      Kelly Curtin-Hallinan, DO | Conditions
    • Online eye exams spark legal battle over health care access

      Joshua Windham, JD and Daryl James | Policy
    • FDA delays could end vital treatment for rare disease patients

      G. van Londen, MD | Meds
    • Pharmacists are key to expanding Medicaid access to digital therapeutics

      Amanda Matter | Meds
    • Why ADHD in women requires a new approach [PODCAST]

      The Podcast by KevinMD | Podcast

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

View 5 Comments >

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

ADVERTISEMENT

  • Most Popular

  • Past Week

    • Forced voicemail and diagnosis codes are endangering patient access to medications

      Arthur Lazarus, MD, MBA | Meds
    • How President Biden’s cognitive health shapes political and legal trust

      Muhamad Aly Rifai, MD | Conditions
    • The One Big Beautiful Bill and the fragile heart of rural health care

      Holland Haynie, MD | Policy
    • America’s ER crisis: Why the system is collapsing from within

      Kristen Cline, BSN, RN | Conditions
    • Why timing, not surgery, determines patient survival

      Michael Karch, MD | Conditions
    • How early meetings and after-hours events penalize physician-mothers

      Samira Jeimy, MD, PhD and Menaka Pai, MD | Physician
  • Past 6 Months

    • Forced voicemail and diagnosis codes are endangering patient access to medications

      Arthur Lazarus, MD, MBA | Meds
    • How President Biden’s cognitive health shapes political and legal trust

      Muhamad Aly Rifai, MD | Conditions
    • Why are medical students turning away from primary care? [PODCAST]

      The Podcast by KevinMD | Podcast
    • The One Big Beautiful Bill and the fragile heart of rural health care

      Holland Haynie, MD | Policy
    • Why “do no harm” might be harming modern medicine

      Sabooh S. Mubbashar, MD | Physician
    • The hidden health risks in the One Big Beautiful Bill Act

      Trevor Lyford, MPH | Policy
  • Recent Posts

    • Beyond burnout: Understanding the triangle of exhaustion [PODCAST]

      The Podcast by KevinMD | Podcast
    • Facing terminal cancer as a doctor and mother

      Kelly Curtin-Hallinan, DO | Conditions
    • Online eye exams spark legal battle over health care access

      Joshua Windham, JD and Daryl James | Policy
    • FDA delays could end vital treatment for rare disease patients

      G. van Londen, MD | Meds
    • Pharmacists are key to expanding Medicaid access to digital therapeutics

      Amanda Matter | Meds
    • Why ADHD in women requires a new approach [PODCAST]

      The Podcast by KevinMD | Podcast

MedPage Today Professional

An Everyday Health Property Medpage Today
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

OpenNotes and whether patients should see their medical notes
5 comments

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...