RWJF Comments on Meaningful Use Stage 2 NPRM

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Today, Robert Wood Johnson Foundation (RWJF) formally commented on the Electronic Health Record (EHR) Incentive Program’s Stage 2 proposed rule, issued by the Centers for Medicare & Medicaid Services (CMS). As a national program of RWJF’s Pioneer Portfolio, we, too, recognize health IT’s role as an important tool for improving health and health care in the U.S., and we applaud this effort toward the truly meaningful use of EHRs.

We encourage you to read a selection from RWJF’s general comments on patient engagement:

We are encouraged by efforts in the proposed rule regarding patient and consumer engagement, especially regarding secure messaging; direct, downloadable access to patient data; patient reminders; inclusion of family health history; and provision of patient education. Nevertheless, we would like to see the required percentages higher than proposed in some cases. In addition, as our Project HealthDesign makes clear, patients now expect to engage with their personal health data in apps and on mobile devices of their choosing. We expect this trend to increase significantly. Further, patients will almost certainly expect that the flow of information be in two directions. In other words, patients will reasonably expect they will have both access to personal health data but also the ability to provide personal data to their health professionals. Work by both Project HealthDesign and by RWJF’s OpenNotes project shows that health data is becoming essentially a platform for conversation between patient and health professional. Project HealthDesign uses patient-generated data to spark conversations about the course of treatment. OpenNotes enables patients to see their data and have a discussion with their health professional about that information. A recent study about OpenNotes (Ann Intern Med, 2011;155:811-819) indicates that patients feel very strongly about gaining access to actual information in their medical record. The patients in this study did not share concerns noted by physicians in the study that patients would not understand or would worry about aspects of this information.

Native apps on smartphones and tablets may currently provide the most engaging experiences with health data for the public. Unfortunately importing data about care, such as lab test results, remains a significant barrier to adoption and use for both patients and app developers alike. Ideally, efforts to liberate this data for things like these apps, other personal health information tools as well as a platform for conversations between patients and their health professionals will become a policy reality in future versions of this rule.

Read RWJF’s full comment.

The comment period for the proposed rule closes tonight at 11:59 p.m. EST. Submit a comment at regulations.gov.

Snapshots from the Project HealthDesign Workshop

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Last week, we convened in Nashville, Tennessee for our final Project HealthDesign workshop. Since the program’s inception in 2006, facilitators at the Vanderbilt Center for Better Health have helped us hone our ideas and collaborate across teams. These workshops have also served as critical opportunities for building a program that’s more than the sum of the individual projects.

Our workshops typically include participants from each grantee team, our National Advisory Committee, Robert Wood Johnson Foundation, the National Program Office, and several consulting groups. During this workshop, however, we were also delighted to welcome several special guests who are thought leaders from AHRQ, NSF, ONC, Kaiser Permanente, Open mHealth and Vanderbilt University Department of Biomedical Informatics.

Each of our five current Project HealthDesign grantee teams has conducted a demonstration project in which patients with chronic diseases have actively and/or passively tracked observations of daily living (ODLs). The resulting data has provided feedback to patients as they self-manage their health outside of clinical visits and has informed clinicians as they engage in clinical decision-making processes. Each team has implemented a unique system and approach toward these ends. Most teams are in the process of wrapping up their interventions, but many have not completed their evaluations.

For a comprehensive scan of tweets from the workshop (collected via the #phdworkshop hashtag), be sure to visit the “Preliminary Report Out from Project HealthDesign Grants” Storify curated by RWJF’s Steve Downs. For a recap from one of our special guests, read Ted Eytan’s “A visit to Project HealthDesign and the patient voice, spoken through their observations of daily living.”

Read on for snapshots from the workshop:

iN Touch participants more interested in yesterday or today's data than reports that show trends over time. #phdworkshop

— Project HealthDesign (@PrjHealthDesign) April 25, 2012

#phdworkshop We KNEW workflow mattered in effective use of #ODL s but we didn't realize that there are TWO workflows - pts AND providers!

— Patti Brennan (@pattifbrennan) April 25, 2012

@PrjHealthDesign grantees enrolled lots of hard-to-engage patients with very modest incentives. Hmm. Learnings here. #phdworkshop

— Patrick McCabe (@PMcCabe_GYMR) April 25, 2012

#phdworkshop what an asthma dashboard might look like, pt dropping into the danger zone. twitter.com/tedeytan/statu…

— Ted Eytan, MD (@tedeytan) April 25, 2012

In the future how will IT change your physical and emotional health? The line between utopia and dystopia can b fuzzy #phdworkshop

— Lygeia Ricciardi (@Lygeia) April 26, 2012

#phdworkshop Health is what happens when you pay attention to your life

— Deven McGraw (@HealthPrivacy) April 26, 2012

Great examples of mobile and sensor data #odl improving health care at the #phdworkshop. Thx @stephenjdowns @pattifbrennan

— Matthew Lee (@mattllee) April 27, 2012

Do we need a Technology Activation Measure in addition to a Patient Activation Measure? (A question from #phdworkshop)

— SusannahFox (@SusannahFox) April 27, 2012

Greetings from the Project HealthDesign Workshop

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Be sure to follow along today and tomorrow as we gather in Nashville for our final Project HealthDesign workshop. Facilitated by the Vanderbilt Center for Better Health, these workshops have been vital to helping our grantee teams collaborate successfully, as well as for helping us identify themes and ideas at a program level. However, this is a unique workshop — even for us — in that we’ve invited the inspiring members of our National Advisory Committee, as well as a small group of special guests, to help us carry Project HealthDesign's vision forward. We’re gearing up to dream together about how our vision and work might impact health and health care in the future.

The great news is that you can follow along during the workshop by plugging into the #phdworkshop hashtag on Twitter. Please join us!

Patient Engagement is the Hallmark of Patient-Centered Care

Project HealthDesign Comments on PCORI Draft National Priorities for Research and Research Agenda

Patricia Flatley Brennan, Ph.D., R.N., Project HealthDesign National Program Director

Editor’s note: This post is third in a series on patient engagement. Many of our health policy comments, including the one below, deal with patient engagement and patient-centered approaches to health and health care.

I appreciate the opportunity to provide comments on PCORI’s “Draft National Priorities for Research and Research Agenda” (Draft National Priorities), published January 23, 2012. I serve as director of Project HealthDesign, a national program of Robert Wood Johnson Foundation’s Pioneer Portfolio. Through Project HealthDesign, I have come to realize that being “patient-centered” means engaging patients in all parts of the care process, from designing and selecting treatment approaches, to determining relevant indicators of success, to evaluation of the desirability and achievement of the outcomes obtained. Although many groups understand “patient-centered” to mean that patients are the targets or recipients of health care, Project HealthDesign promotes a vision in which “patient-centered” means that patients are involved in the design, implementation and evaluation of care.

The Draft National Priorities addresses patient needs and preferences, and also focuses on engaging patients in identifying areas for further research. However, we believe patients have a lot more to offer than simply providing input into research priorities. Early and frequent engagement of patients and their caregivers – from characterizing a problem all the way through the process of addressing and solving it – is the hallmark of patient-centered care. Patient-centered care requires more than a one-time engagement of patients; it requires systematic, deliberate and ongoing engagement of patients in dialogue about priorities, clinical investments and therapeutic strategies.

We challenge PCORI to create effective research models that engage patients, garner patient participation across the care continuum, and provide meaningful indicators of the patient-centeredness of the care provided. PCORI must take the lead in determining the extent to which patient-centered care improves the lives and well-being of individuals and/or results in a more efficient and effective health care delivery system.

Specifically in regard to priority 3, part D (page 19), I present Project HealthDesign as an effective case study for what an “innovative approach” might look like. Following a design-demonstrate-evaluate process, Project HealthDesign’s five current initiatives are working with more than 135 patients with various chronic diseases. Because we engaged teams who share a common focus on patient-centeredness but are addressing different clinical care problems, each team has been able to leverage findings from the other teams.

Through these linked grants, the teams have equipped their patient participants to track, review and share with their care providers “observations of daily living,” or ODLs. Five teams are engaged in evaluating the impact of sharing ODLs on patients’ care and care outcomes. These ODLs are patient-generated, can range from information about an individual’s pain or energy levels to truly unique observations about a patient mood state, and may serve as another class of patient-centered outcomes. Reports resulting from this data help patients and their caregivers take action to improve the patient’s day-to-day health outside of the clinical setting. These reports also help to improve the quality of clinical visits and provide clinicians a clearer view of the patient’s daily life and health. For more information about our work, please contact me directly or visit projecthealthdesign.org.

This comment was submitted to PCORI in response to its “Draft National Priorities for Research and Research Agenda.” To learn more about PCORI, please visit pcori.org.

Read more health policy comments from Project HealthDesign.

Kicking Off the Patient Engagement Series

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

If you’ve been reading the Project HealthDesign Blog for a while, then you know we have a lot to say about patients (e.g., patient engagement, patient-centered health care, patient-clinician communication, patient activation, etc.). In fact, we believe patients are the experts in their own day-to-day health experiences. That’s why our five current grantee teams are working with real patients — more than 135 of them, in fact — who live with a variety of chronic diseases. Each of the five projects has taken a distinct approach to allow patients to capture and review data about their observations of daily living, symptoms and/or activities of daily living outside of clinical visits. To this end, each group has developed a unique technical arrangement in hopes that the resulting data and summary reports will help provide the participants themselves, as well as their clinicians and caregivers, a richer picture of the patient’s day-to-day health.

Be sure to follow along this week and next as we dive into the topic of patient engagement. You’ll hear from two inspiring members of our National Advisory Committee, as well as one of our current grantee teams, on a variety of topics related to patient engagement and participatory medicine. Stay tuned. You won’t want to miss this series!

Developer Challenge Roundup

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Gather a team of developers and innovators and plan to enter an upcoming developer challenge. The following developer challenges, organized by the Office of the National Coordinator for Health IT (ONC), provide several opportunities to engage in health-related topics that could help to improve health and health care.

ONC i2 Challenges

Health Innovations in Commuting Challenge

• The challenge: Create and submit a conceptual document that outlines ideas and models for improving the health of American commuters through better collection, exchange, and analysis of health data.
• Requirements and desired functionality: Challenge entrants will submit a conceptual document that outlines how health data may be appropriately collected from commuters in a safe and secure manner during the overall commute or during key milestones or events of the commute; how health data may be transmitted in a secure and standardized manner; how health data may be analyzed, either at an individual or population level.
• End of submission period: March 5
• Learn more or register for the challenge.

EHR Accessibility Module Challenge

• The challenge: Create and test a module or application that makes it easy for disabled users to access and interact with the health data stored in their EHRs.
• Requirements and desired functionality: The resulting app or module will enable individuals with disabilities to easily interact with their health data, link to relevant local or online communities or organizations, be able to download data from at least one EHR system, leverage and extend NwHIN standards and services including, but not limited to, transport (Direct, web services), content (Transitions of Care, CCD/CCR), and standardized vocabularies. The resulting module or app must also comply with web and other designated accessibility standards.
• End of submission period: July 23
• Learn more or register for the challenge.
  
  

ONC and Partnership for Patients Challenge

Discharge Follow-up Appointment Challenge

• The challenge: Develop a web-based tool that makes post-discharge follow-up appointment scheduling a more effective and shared process for care providers, patients and caregivers.
• Requirements and desired functionality: Develop the tool using user-centered design principles; incorporate messaging and EHR interface capabilities. Create a plan for how to scale and encourage adoption.
• End of submission period: April 30
• Learn more or register for the challenge.

Project HealthDesign Director Shares Views on Patient Engagement in InformationWeek

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Head over to InformationWeek today to read “Is 2012 the year of online patients?,” which features insights from Project HealthDesign Director Patricia Flatley Brennan, Ph.D., R.N. In the article, Marianne Kolbasuk McGee explores what 2012 might hold for patient engagement in health care. She also interviewed Missy Krasner, a former Google Health executive. Read an excerpt below, or visit InformationWeek to read more.

“… doctors will have to convince patients to get more involved in their own healthcare--including using their own data to keep better tabs on their illnesses. In fact, payments tied to better patient outcomes--helped by smarter use of patient data-- is a big driver for more healthcare providers to participate in patient engagement initiatives, Brennan said.

Yet, with so much on doctors' plates as it is—"most doctors don't want a tsunami of new data" added to EHR and other systems from their patients' home health monitoring or wellness devices, said Brennan. That's especially true since most of this data doesn't warrant emergency care.

However, when there is an issue that requires immediate attention, Project HealthDesign teams have found that patients' monitoring data can be successfully sent to or shared with other clinicians, such as triage nurses or case managers, who can often help facilitate earlier intervention, or give feedback to patients without overwhelming doctors.”

Project HealthDesign Health Policy Comments Featured on Pioneering Ideas

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

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.

via rwjfblogs.typepad.com

Visit Pioneering Ideas today to read "Project HealthDesign Provides Input on Health IT Policies" and learn about the seven health policy comments we issued in 2011.

KevinMD Features Op-Ed from Past Project HealthDesign PI

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Visit KevinMD.com today to read “Using a mobile app to help chronic pain,” an op-ed by Roger Luckmann, M.D., M.P.H. Dr. Luckmann, who is a family physician, served as principal investigator of a past Project HealthDesign team from the University of Massachusetts Medical School. His team designed an electronic pain and activity diary to help patients document their daily pain experiences, medication regimens and physical activities. This system inspired Dr. Luckmann’s work on a similar mobile application that is set to launch in the Mac App Store soon. Read the article to hear Dr. Luckmann’s perspective on effectively managing pain by learning more about patients’ daily lives and activities.

Top 5 Posts from 2011

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Join us as we look back at our most-read posts from 2011. We’re grateful for your interest and the many conversations these posts have sparked throughout the past year. We look forward to sharing more updates with you, and encourage you to tell us what you'd like to hear about in future posts.

1. BreathEasy Android Application and Web Dashboard Design
   “The BreathEasy Android application is designed to be an easy-to-use tool that allows study participants to enter observations of daily living (ODLs) such as peak flow readings, asthma triggers, stress and activity levels, sleep patterns, symptoms and medication use.”
   
   
2. PCAST Report Comment: Looking Toward Truly Patient-centered Health Data
   “Yet even as I affirm the overall spirit of the report, I find myself searching for a more explicit focus on the patient. I was hoping for a report addressing health information technology, but this report focuses more on health care information technology.”


3. When is a Mobile App a Mobile Medical App?
   “Today, medical conditions are significantly improved — and even prevented — by healthy behaviors, and providers might prescribe or at least recommend particular diet or exercise protocols as part of medical treatment. Many mobile health applications in development and in active use today fall in this gray area between medical and health/wellness.”
   
   
4. Patient Engagement: A Key Ingredient in Accountable Care Organizations
   “We think that knowing a patient’s observations of daily living (ODLs) could help ACOs meet quality improvement goals under the Medicare Shared Savings Program. We also believe that the program, with its focus on patient engagement and care coordination, could go a long way toward convincing health care providers to incorporate patient-defined, patient-generated health information into the clinical care setting.”
   
   
5. In the Wake of Google Health
   “Beyond support for clinical health information, we know people also want support for personal health information like observations of daily living. These types of personal information have little representation within current EHRs. Thus, a central challenge will be to provide systems that can integrate both clinical and personal health information in meaningful ways.”

What other posts from our blog or other sites are on your must-read list from 2011? Let us know in the comments.