Last Friday, Patricia Flatley Brennan, RN, PhD, Project HealthDesign’s national program director, and Nikolai Kirienko, co-project director for Project HealthDesign’s Crohnology.MD team, testified at a hearing on the incorporation of patient-generated data into Meaningful Use Stage 3 criteria. The hearing was organized by the Meaningful Use Workgroup of the Federal Health IT Policy Committee.

Meaningful Use Stage 3, scheduled to roll out in 2016, will set requirements for health care providers seeking incentive payments for the adoption of electronic health records. Brennan’s testimony drew upon the experiences of all 14 Project HealthDesign teams working with patients and clinicians to collect and track patient-generated data. Previously, Brennan provided testimony to set requirements for the first stage of Meaningful Use.

Kirienko’s testimony drew upon the experiences of Project HealthDesign’s Chronology.MD team; he also spoke as an advocate for patient engagement in health and health care through collaboration with clinicians around patient-generated data. His testimony focused on the need for patient access to electronic health records and the need for standards for dynamic patient engagement on mobile devices.

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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.

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.