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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.

Shorter Antibiotic Regimens Might Counter Antibiotic Resistance

Jan 12, 2012, 9:05 AM, Posted by Pioneer Blog Team

Antibiotics on the shelf today are increasingly losing their potency against resistant microbes or “superbugs” like the potentially lethal methicillin-resistant Staphylococcus aureus, or MRSA.

Extending the Cure researchers published an analysis this week that questions the conventional wisdom regarding antibiotic dosing practices and suggests rethinking the guidelines to minimize the growing public health crisis posed by antibiotic resistance. Ramanan Laxminarayan, director of Extending the Cure, and his colleagues, used mathematical models to study antibiotic treatment guidelines, the regimens physicians follow for the standard dose and duration of antibiotic treatment for common infections.

While antibiotic dosing regimens have typically been designed to cure bacterial infections, rarely have these guidelines taken antibiotic resistance into account.  All antibiotic use contributes to the development of antibiotic resistance, and the new research suggests dosing guidelines could be optimized to both treat infections and limit the spread of resistant microbes. The analysis, published January 11 in the online scientific journal PLoS ONE, indicates that in many cases, a shorter regimen of antibiotic treatment could work just as well as a longer course yet still reduce the risk of resistance.

Dosing strategies for antibiotics are not set in stone.  For example, many physicians have switched from the traditional 10-day course of antibiotics and now effectively prescribe a three-day regimen to treat otitis media, or middle ear infections. In some cases, the authors argue, shorter dosing regimens like this one could limit the selection pressure for resistant bacteria and thus reduce the threat of resistance.

Extending the Cure, a project of the Center for Disease Dynamics, Economics & Policy sponsored by the Robert Wood Johnson Foundation’s Pioneer Portfolio, is working to change how we think about antibiotics, a resource that can be depleted with overuse. This study suggests that shorter treatment regimens, in some cases, may help us preserve the power of the antibiotics we still have left.

Let us know what you think:  Are there any risks to shortening current treatment regimens? Are there any other benefits? Leave a comment here or tweet at @ExtendgTheCure and @PioneerRWJF #SaveAbx to tell us what you think.

Inviting Patients to Read Their Doctors' Notes

Jan 10, 2012, 4:00 AM, Posted by Pioneer Blog Team

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.

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!