Last week, I had a flashback to a Saturday night in 2010, when I was in my last semester as a second-career nursing student.

It was a beautiful spring night and my family was gathered around a bonfire in the backyard. I, on the other hand, was sitting at the kitchen table, still in my scrubs. My laptop open, I was staring at the blinking cursor. As usual, I was struggling to finish my “patient database”—my school’s version of a nurse’s note about what happened, clinically, with my assigned patient that day:

1430: Patient received drowsy but AOx3. MAE, equal strength. Primary nurse reports patient requires one-person assist OOB to chair; patient not OOB this shift. PERRLA. Skin is warm & dry, no bruising noted. IV site (20 g left outer forearm) is clean, dry and intact; no pain or erythema noted. Capillary refill <3 sec. Heart sounds audible and regular. Radial and pedal pulses present & equal bilaterally. No edema noted. RR 16, unlabored. SAO2 94% on room air…

Originally posted on The Health Care Blog.

A few years ago, Tom Delbanco and Jan Walker pitched us with a simple idea: Patients should routinely be able to see the notes that physicians write about them.  Now it’s true that we all have the legal right to see these notes, but obtaining them is anything but routine. The process involves phone calls, faxes (sic), duplicating fees and all sorts of other demoralizing steps. The net result is that reviewing your doctor’s notes about you is a rare experience.

Tom and Jan said that the physicians with whom they had spoken about this idea were split. Some were interested, some were resigned: They recognized that transparency was an increasingly powerful wave and that the world seemed to be heading this way, and the others thought they were crazy—notes were for documentation and communication among doctors and were never intended for patients.  The arguments were of a religious quality—they were about belief and values.  The obvious solution was to test the idea and let data help sort it out.  Today, with the publication of the study results in the Annals of Internal Medicine, that debate is now illuminated.

Suzanne Mintz, President and CEO of the National Family Caregivers Association

Nearly one third of adults in the U.S. provide care for a chronically ill, disabled or aged family member or friend during any given year, spending an average of 20 hours per week providing care for their loved one. Many are responsible for helping coordinate their loved one’s medical care—keeping track of doctor’s appointments, reminding care recipients to take medications and monitoring their overall health.

Asking patients to share doctors’ notes with their family caregivers can help caregivers be more effective in this role. It can also help both patient and caregiver feel more in control and allow them to more fully engage in health care decisions. Yet few patients act on their right to access and share their doctors’ notes, lab test results and other information contained in medical records.

Reminding women—who so often play the role of family caregiver and drive health care decisions in families—that this resource is available and encouraging them to ask doctors for copies of their notes is critical. That’s why I was so pleased to read about OpenNotes in the May issue of the magazine Redbook.

Lately, there’s been a lot of conversation about increasing patient access to medical information. Much of this debate was sparked when Kathleen Sebelius, secretary of the Department of Health and Human Services, stated, “When it comes to health care, information is power.” While many providers and most patients are in support of increasing patient access to medical information, there are some who feel this change will make doctors’ jobs harder.

OpenNotes, a Pioneer-supported program that makes it easy for patients to access their doctors’ notes after a visit, is at the heart of this debate, as was seen in a series of columns in February’s SGIM Forum. In this newsletter Tom Delbanco, MD,  and Jan Walker, RN, MBA,  the lead investigators working to determine the impact of sharing doctors’ notes with patients (Part 1),  debate the merits of this new level of transparency  with Douglas Olson, MD (Part 2), and well-known patient advocate e-Patient Dave (Part 3).

In a post on The Health Care Blog, John Lumpkin, MD, MPH, senior vice president and director of the Health Care Group at RWJF, weighs in on this debate.  Learn why Lumpkin thinks that increasing access is a good idea and tell us what you think.

Will patients be more likely to seek a second or third opinion? New York Times

Will reading your doctor's notes lead to better health? USA Today

Can Patients Handle the Truth? TIME

These questions and others were posed following the release of OpenNotes’ findings about patient and doctor attitudes toward opening doctors’ medical notes to patients. The survey of nearly 38,000 patients and 173 primary care physicians revealed patients were enthusiastic about the prospect of reading their doctors’ notes while doctors were cautious.

Patients who signed up for the project, such as Linda Johnson, 63, a Harborview patient,  told The Seattle Times she found the notes helpful in recalling what she and her doctors had talked about and how she was supposed to follow up. "I have found, as I get older, I need more visits to the doctor, and there are more things we need to talk about…I find having them written down helps a lot." Patient Candice Wolk, a 39-year-old mother of twins, told the New York Times that reading her notes after a pregnancy check-up reminded her to follow-up with a dermatologist to have a dark spot on her back checked. 

Doctors enrolled in the project also shared their thoughts. David Ives, MD, an internist at Beth Israel Deaconess, told American Medical News he thinks OpenNotes is a rousing success, saying “The patients loved it, and it had absolutely no impact on me really at all. It was amazing how little impact it had.”

Bloggers chimed in too, including patient advocate Trisha Torrey who called on her readers to “continue to encourage your doctor to share your records –  to provide easy access to you” and Ted Eytan, who wrote that “here’s something in health care that most patients want to receive, but not all doctors want to provide.”

The media stories and blog posts such as those on The Health Care Blog, TIME’s Healthland Blog, NPR’s Shots Blog, and Vitals on MSNBC.com sparked conversations and debate and were shared widely through social networks.  You can join the conversation by commenting on these stories or tweeting @myopennotes or @pioneerrwjf.

Looking ahead, one thing is clear: the final results of OpenNotes, due later this year, are eagerly awaited and have the potential to spur real change in the way doctors share information with patients about their health and health care.

OpenNotes is funded by the Robert Wood Johnson Foundation’s Pioneer Portfolio. The survey results were published December 19, 2011, in the Annals of Internal Medicine.