Since health reform passed almost two years ago, we’ve seen the health care system begin to change quite a bit. The push for better uses of health IT has brought about many proposed rules and programs, and federal agencies have requested public input on many of these proposals.

Because Project HealthDesign has always included multi-disciplinary teams of researchers, clinicians, and patients who are helping to lay the foundation for a patient-centered health IT system, we’ve seized these opportunities to share our unique insights by commenting on several proposed policies. In the process, we’ve been able to share our thoughts about promising practices for collecting patient-generated data and incorporating it into the clinical care process.

In 2011, Project HealthDesign provided feedback on seven proposed policies. These ranged from applauding the HHS Proposed Rule on Patient Access to Lab Reports, which would allow patients to become more engaged with their health data, to calling for better distinctions between mobile apps and mobile medical apps under the FDA Mobile Medical Application Guidance. Working together to help refine these types of policy proposals is even more critical now as we enter a new era of widespread adoption and use of health IT.

Read Project HealthDesign’s policy comments, watch “How Clinicians Can Help Guide Federal Conversations About Health IT,” or visit the Project HealthDesign website to learn more.

You can also check out Dr. Roger Luckmann's post on KevinMD.com about how Project HealthDesign is helping people with chronic diseases manage pain.

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.

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.

BY THOMAS FEELEY, MD, Vice President of Medical Operations, University of Texas MD Anderson Cancer Center, Houston, Tex.

Patients should know what’s going on with their health and health care. OpenNotes, which enables patients to see their doctors’ notes, is a simple idea that can help improve the patient experience and empower patients to become true partners in their care.

But OpenNotes has found that most doctors are wary of this intervention. Its survey of patients’ and doctors’ attitudes toward sharing electronic medical notes revealed doctors are worried about increased demands on their time and frightening or confusing patients.

These fears are overreactions. At the University of Texas MD Anderson Cancer Center we have been giving patients access to their electronic medical records—including their doctors’ notes—since May 2009. While initially doctors complained that they had to explain more to their patients about what was written in their records, the doctors soon came to realize the benefit of having patients who are more informed about their care plan and lab results.

Today, 84 percent of our patients have obtained access to their electronic medical records, including their doctor visit notes, via a secure Web-portal. Patients have actually become avid readers of their medical notes. 

This has been a particularly important intervention at a cancer center like ours. Our patients are treated on an outpatient basis and in one visit often travel from the lab to the doctor’s office and then to get chemo. Having their medical information as they move from location to location makes a huge difference to our doctors. And it has made a huge difference to our patients and their caregivers. Cancer is a family event. It’s rare that a patient is not accompanied by a family member when they come to our clinic.  We know they are sharing their records and doctors’ notes with their family and we think it helps them and their family members get a better understanding of what’s going on with them.  

Our experience at MD Anderson helps build the case for why this kind of transparency is a good step for patients and doctors. But what we don’t have yet is the scientific evidence and rigorous research to show that opening medical notes does not significantly impact doctors’ time and work flow, or make patients more confused or anxious. 

That’s why the OpenNotes demonstration results will be so important to mapping out the future.  Because it has been tested for 12 months in three very different sites around the country with very different sets of patients, it can provide important answers to questions and help guide future efforts to make sure this model works effectively.

Rather than spending so much time fretting about the implications of sharing information, we should be looking to projects like OpenNotes to show us how we can make it work for both patients and physicians to improve care and improve lives.