Transparency in Healthcare


Blog post by Cait DesRoches, DrPH and Liz Salmi. Introduction by Joe Babaian.

This week on #hcldr we are excited and fortunate to have two amazing guest hosts from OpenNotes. – Cait DesRoches, DrPH @cmd418  and Liz Salmi @TheLizArmy.

Cait DesRoches' photoCait is a distinguished health services researcher with expertise in emerging trends in healthcare delivery. She came to OpenNotes from Mathematica Policy Research, a national firm with extensive expertise in social policy research, where she was a Senior Fellow studying the use of electronic health records by hospitals and physicians, the effect of healthcare organizations on physician clinical practice, physician capacity to provide coordinated patient-centered care, and primary care workforce issues.

Liz is the OpenNotes Senior Multimedia Communications Manager. She’s also a patient medicine_x_vignettewho does not have access to her notes. After being diagnosed with a malignant brain tumor after her 29th birthday, Liz began blogging about her patient experience. From 2008 to 2017, her 500 blog posts mirror her 4,836-page medical record. If people had access to their notes, Liz believes people could be more actively engaged in their health sooner, younger, or before the diagnosis of a serious or chronic condition.

OpenNotes @myopennotes is a national movement dedicated to making health care more open and transparent by encouraging doctors, nurses, therapists, and others to OpenNotes-Logo-2014share visit notes with their patients using secure, patient portals. As a non-profit advocacy organization–not a software or a product–we believe that making it easier for patients, families, and caregivers to access personal health information will ultimately improve the quality and safety of care. OpenNotes receives support from @RWJF  @PetersonCHealth  @MooreFound  @commonwealthfnd  @CambiaHealthFdn  @CRICOtweet

The topic Cait and Liz have chosen for us is a critical one – transparency in healthcare – more precisely the ability of patients to access and view the clinical notes from their various healthcare interactions. Going beyond simply technological and or cultural barriers to open access, we are interested in patients being empowered by their access. It’s a hot topic and having Liz and Cait lead us in the discussion is a wonderful opportunity to engage with this issue. We’re looking forward to next week’s chat on Tuesday, October 10th at 8:30pm ET (for your local time click here).

What’s Important About Transparency?

We hear a lot about transparency in health care. Much of this discussion is focused on price, quality, and value. There’s general agreement that patients need the right information to make good, cost-effective decisions about the care they receive.

Opening clinical visit notes to patients is a natural piece of that kind of transparency. If we’re going to ask patients to make important decisions such as, “Should I get treatment A or treatment B?” we need to give them all of the tools they need, and the clinician note is a rich source of data to use as a starting point.

The Health Insurance Portability and Accountability Act (HIPAA) gives people the legal right to receive this information, but the process is often difficult. Requesting medical records takes time, effort, and money.

Are we at odds or a crossroads? Maybe the answer is both. Today, 80+ health systems across the country are sharing visit notes, through secure patient portals. That means more than 17 million people can review their notes, online, whenever they choose. The growth in note sharing is amazing progress in a short period of time, but it still only constitutes just 5% of the U.S. population.

The biggest barrier to transparency in health care is not technological; it’s cultural. We know change is hard. We’ve experienced the resistance, and we’ve heard the worries that initiatives like OpenNotes will lead to more work and confusion among patients. But so far, those fears don’t bear out. We know patients want their notes and experience benefits when they read them. We are starting to see signals that clinicians may benefit too. So our advice is to take a deep breath, be brave, and offer patients easy access to the information they need.

We still have much to learn about what happens to clinicians and patients when we have fully transparent medical records. Please join us Tuesday, October 10, 2017, at 8:30 pm ET (for your local time click here) as we discuss the following topics:

  • T1: Why should we care about transparency in healthcare?
  • T2: In a still physician-centered industry, how does transparency move health care toward patients?
  • T3: How can openness and transparency shift the culture of health care in other ways?
  • T4: How might we get more health systems to make transparency a priority rather than just give it lip service?
  • T5/BONUS: How might healthcare professionals unite to move the needle?



References for Review

“Inviting Patients to Read Their Doctors’ Notes,” Tom Delbanco and Jan Walker, et al., Ann Intern Med, 2012,, accessed on 2 October 2017.

“A patient feedback reporting tool for OpenNotes: implications for patient-clinician safety and quality partnerships,” Sigall Bell et al., BMJ Quality & Safety, 16 December 2016,, accessed on 2 October 2017.

“Stop the privatization of health data,” John T. Wilbanks and Eric J. Topol, Nature, 21 July 2016,, accessed on 2 October 2017.

“Tomorrow’s patients will demand greater transparency and openness,” Liz Salmi, The BMJ Opinion, 7 April 2017,, accessed on 2 October 2017.

“What patients value about reading visit notes: a qualitative inquiry of patient experiences with their health information,” Macda Gerard, et al., JMIR, July 2017,, accessed on 5 October 2017.

“Your Patient Is Now Reading Your Note: Opportunities, Problems, and Prospects,” Jared W. Klein, et al., The American Journal of Medicine, October 2016,, accessed on 5 October 2017.

“OpenNotes: How the Power of Knowing Can Change Health Care,” Sigall K. Bell, et al., NEJM Catalyst, October 2016, ePub,, accessed on 5 October 2017.

“Characteristics of Patients Who Report Confusion After Reading Their Primary Care Clinic Notes Online,” Joe Root, et al., Health Communication, 4 November 2015,, accessed on 5 October 2017.

“Sharing Physician Notes Through an Electronic Portal is Associated With Improved Medication Adherence: Quasi-Experimental Study, “ Eric Wright, et al., J Med Internet Res, October 2015,, accessed on 5 October 2017.

Photo Credit:

CC0 Creative Commons License

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