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Making Sense of the Debate Over Patient Access to Medical Information

Feb 16, 2012, 11:33 AM, Posted by Pioneer Blog Team

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.

OpenNotes: Mind the Gap

Jan 4, 2012, 9:00 AM, Posted by Steve Downs

Last week, I contributed to The Health Care Blog about OpenNotes, a Pioneer grantee that is enabling patients to view the notes their doctors write after a medical visit. I wrote that it is a simple idea – but also a dangerous one.

OpenNotes recently completed a pre-survey published in the Annals of Internal Medicine that asked doctors and patients about their expectations of how the idea would play out in real life. What they found is fascinating. Doctors and patients are clearly divided. On a wide range of possible benefits, doctors are more skeptical than patients. But what really jumps out are the responses to questions of whether patients would find the notes more confusing than useful, and whether the notes would make them worry more. The gap is dramatic. In each case, most doctors said “yes” while less than one in six patients agreed.

Why this disconnect between doctors and their patients? Why the gap between what doctors believe their patients can handle, and what patients feel they are ready to see?

The post has generated a nice discussion on the blog, and in the comment responses you’ll find that the results of the survey are reflected in the dialogue. I recently added my own two cents to the conversation, and I’d love to see you post your thoughts, as well.

The survey results have also been covered by USA Today, MSNBC.com, and TIME’s Healthland Blog.

OpenNotes Hints at Great News to Come

Nov 10, 2011, 11:20 AM

Pioneer grantees Tom Delbanco and Jan Walker, the creative and scientific minds behind OpenNotes, this week published an opinion piece in Modern Healthcare championing the need for patients to easily and securely access their doctor’s notes online and discussing early results from their project. The piece says, “We are learning that patients are overwhelmingly interested in gaining rapid access to their notes and that many doctors appreciate the potential for open records to improve care.” Check out “e-Patient” Dave deBronkart’s take on the Modern Healthcare story.  He calls the early results, “A hint of great news to come, for lovers of participatory medicine.” We couldn’t agree more, and can’t wait for an update coming later this year and final results due out later in 2012.  Stay tuned!