Now Viewing: Shared decisionmaking

Project HealthDesign and Patient-generated Data

Jun 27, 2012, 1:38 PM, Posted by Libby Dowdall

Project HealthDesign National Program Director Patricia Flatley Brennan, R.N., Ph.D., shares how Project HealthDesign views patient-generated data.

Project HealthDesign is a national program of the Robert Wood Johnson Foundation's Pioneer Portfolio. This post originally appeared on the Project HealthDesign blog on June 26, 2012.

Throughout Project HealthDesign’s history, our grantee teams have worked closely with patients in order to explore the potential of personal health records (PHRs) and personal health data. As our first nine teams worked on their projects, they listened closely to patients and began hearing patients describe their health in idiosyncratic ways. Their work led to the recognition of observations of daily living (ODLs) — information about an individual’s life that is both patient-defined and patient-generated.

Project HealthDesign's five most recent grantee teams have carried this vision forward by designing five different technical systems that allow patients to track their ODL data. In these projects, patient participants have tracked a variety of ODLs, from daily activity and stress levels to socializing and moods.

But ODLs are just one type of patient-generated data. Other types include traditional patient-reported information about signs and symptoms (e.g., blood pressure, blood glucose), sensor data, patient preference data, and patient-reported quality assessment data.

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Project HealthDesign Calls for Patient-Generated Data in Meaningful Use Stage 3 Criteria

Jun 13, 2012, 7:30 AM, Posted by Pioneer Blog Team

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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Taking Note

Jun 12, 2012, 2:00 PM, Posted by Pioneer Blog Team

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.

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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.

Project HealthDesign Provides Input on Health IT Policies

Jan 10, 2012, 8:37 AM, Posted by Patricia Flatley Brennan

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 about how Project HealthDesign is helping people with chronic diseases manage pain.