Patti Brennan: We need new policies for a new era of patient-centered care

WendySwanberg, Project HealthDesign Communications Project Assistant

Last week, national program director Patti Brennan held a briefing in Washington, DC, to speak with policy makers about the many insights that have emerged from the work of Project HealthDesign. While it's nearly impossible to summarize the findings of a project that's been evolving for nearly a decade, Patti does a beautiful job in this brief video.

We're at an important juncture in the future of healthcare and health technology, and a critical point for policymakers to attend to the knowledge gained by in-depth research like that conducted by Project HealthDesign's project teams.  Patti stresses four key considerations:

• The EHR is not enough

• We need safe and trustable ways to manage clinically-generated data and patient-generated data

• We need practice-permissive policies that support the use of patient-generated data and enable inter-visit care actions

• We need to expand the concepts of confidentiality and privacy to better fit the data landscape

These ideas have been germinated over the Project's duration, and we've chronicled much of their history on our website. In the months ahead,we invite you to explore the rich content on our website, and to keep the conversation going!

 

 

Changing Health Paradigms: A personal perspective

Linda Brei, Project HealthDesign Communications Consultant

In the late 1970s I had my first experience working for a health care related grant with the Community Care Organization (CCO) project, funded by the Kellogg Foundation.  Wisconsin was one of five states selected to demonstrate how Title 19 dollars could be used to pay for in-home care vs. nursing homes for rehabilitation services.  Eventually the results of these demonstrations found their way into public policy decisions and helped to change contemporary thinking about the value of delivering health care to patients in their homes.  

Moving forward thirty years, I found myself working for another program, this one funded by The Robert Wood Johnson Foundation, that has the potential to support an even greater paradigm shift in our thinking about patient care in non-clinical settings.  Project Health Design began with the goal of creating a vision of how Personal Health Records (PHRs) could become a valuable tool to facilitate patient-clinician communications.  By the close of Project HealthDesign’s first grantee projects, the Program had created intriguing visions of how individual patients could use electronic devices to capture and share health information with their clinicians.  As the project teams looked at what data could be valuable to clinicians, the concept of using Observations of Daily Living - patient generated, recorded and often interpreted data - emerged.  This simple concept – that individuals can become active participants in managing their own health if they identify and then pay attention to cues from their daily lives – can be transforming.  These observations can be used by the individuals alone or shared with a clinician, care giver or even family member in a team effort manage the individual’s health.

For me personally, the idea of ODLs was affirming and empowering.  I am a migraine sufferer. Thinking I could perhaps avoid migraines if I could find what triggers them, I kept food diaries and looked at hormonal cycles with the hope of finding the root cause and mitigating if not completely avoiding a headache.  Had my simple attempt at finding a cause for my headaches worked, a clinician would probably have believed my primitive research and pursued some sort of treatment.  But, this wasn’t the case.  When I was assigned to write about ODLs, it occurred to me I might try to identify cues rather than causes and then take preventive action.  This helped me uncover an elusive, personal and complex set of warning signs to which I could pay attention and act upon. 

What Project HealthDesign brings to me and hopefully to the greater effort of managing health vs. curing illness is a sense that health is complex and nuanced.  It is individual and terribly personal.  No physician, however skilled, will know what trips my triggers unless I have a way to tell her; tests and exams only talk about a snapshot in time.  But a skilled clinician in tandem with a very good set of ODL’s and an engaged patient offers something much more promising.  And what that combination seems to promise is fewer unnecessary drugs, fewer emergency calls, more personal responsibility, less expense, more targeted treatments and more prevention. 

Unfortunately, we are moving way too slowly.  There are a multitude of “complexities” around privacy and technology issues, and about how clinicians can recover their facilities costs if they replace a clinic visit with a quick ODL review and text message.  The public debates around policy doctrines such as Meaningful Use have been ongoing for years. Project HealthDesign, among others, has provided thoughtful direction about privacy and other policy concerns.  The nation is at a crossroads about how to deliver good healthcare at reasonable costs, and we have tools that promise to deliver a good chunk of that.  It seems to me we need to begin to bring these tools to the public, realizing that any system of controls will only be perfected through, ironically, using it meaningfully.  So, let’s just do it!

Linda Brei is an independent communications and marketing consultant. Through her firm, Kalliope, LLC, Linda works with businesses and non-profits, particularly in the areas of science and medicine.

Expanding the definition of "patient engagement"

Wendy Swanberg, Communications Project Assistant, National Program Office

This past February, the leading health policy journal Health Affairs devoted an entire issue to the theme of “patient engagement” – the concept that patients can have direct involvement in their own health care.  Policymakers are starting to see patient engagement as something new and powerful, with one healthIT consultant calling it the “blockbuster drug of the century.”

There’s a growing contingent of patient advocates, led by people like Dave deBronkart/ePatient Dave, who are vigorously calling for patients to be equal partners in the health care decisions that impact their lives.  At Project HealthDesign, we’re in full agreement with that idea, and we’ve been working since 2006 to bring patients’ voices squarely into the health care conversation.

As the Health Affairs issue makes clear, “patient engagement” is an evolving concept.  We’re having a national conversation about the role patients should play in health decision-making at a number of levels, from the day-to-day management of illness to the very structure of the healthcare system itself.   But even with this new attention to patients' voices and values, the conversation can still sound like a one-way transmission of medical instructions, laced with a kind of health-paternalism.

At Project HealthDesign, we want to broaden the dialogue and expand the definition of “patient engagement.”  It needs to be a two-way conversation, between parties of equal status.  Clinicians and providers are the trained experts in health care, but patients are the experts in their own lives and their own bodies. Working together, both can do much more to improve health care than either group could do alone.

As our project enters its final weeks, we invite you to explore the work we’ve done and listen to the conversations it has generated – including this second installment of our interview with ePatient Dave. 

 

 

Watch our first ePatient installment, Envisioning the Patient-Centered EHR

A Partnership, not a Prescription – Observations from an Alternative Medicine Practitioner

Rebecca Dymzarov, Policy Analylst Project Assistant, Project HealthDesign National Program Office

In addition to being the policy analyst project assistant here at Project HealthDesign, I am also a licensed practitioner of Alternative Medicine and Acupuncture. Engaging patients to be active participants in improving their health, and identifying health problems through incorporating Observations of Daily Living as a diagnostic tool, is a tried and extremely useful method in the arena of holistic medicine. It is extremely exciting to see this concept enter the main stream through Project HealthDesign.

When a patient comes to me with a health concern, I interview them and obtain the necessary information to formulate a tentative diagnosis and to create a treatment plan. This interview process is an in-depth evaluation of just about every aspect of the patient’s health and lifestyle. The answers to these questions provide valuable input into the diagnostic process.  It is usually a voyage of discovery -- every symptom, and how those symptoms change through the treatment process, provide clues both to me and the patient on how to improve their health.

I am always surprised by how difficult it is for people to answer questions about themselves at the beginning of treatment. Questions like; “how often do you experience pain? have a headache? where do you feel the pain? how often do you feel sad? how often do you have a bowel movement? how often do you wake up during the night? do you have less energy after you eat certain foods? do you feel sick after you eat certain foods?” are often answered with “I don’t know.”  There are always exceptions, but most people aren’t that tuned in with what is happening with their bodies. No one has ever asked them to pay attention to these things. 

Just like everything else in life, to be good at something takes practice. So people who work with me practice making observations about their daily lives. I often ask my patients to keep a journal. These journals  capture the same type of information captured by some of Project HealthDesign’s mobile applications.  Through the interview process, we identify and prioritize what observations they will track by identifying those that are impacting the patient most negatively. In my experience, when the process of discovery and the treatment planning is a partnership instead of a prescription, my patients are more likely to follow through with keeping their journals and following other recommendations.

I have the advantage of seeing my patients regularly and for more than 15 minutes at a time.  During these regular visits, patients get really good at answering my questions and start to notice patterns about their health on their own.  It is easy to see in my patients that a sense of empowerment comes along with actively participating in the discovery of what a healthy lifestyle is for them.  Also, by closely following changes in their daily lives it is easier for them to identify those things that improve their health or make it worse. For many patients, having a record of how their progression through treatment, including lifestyle changes, has positively impacted their health provides continued motivation for them to be their own advocate, and to keep making positive changes.

In addition to being the policy analyst project assistant here at Project HealthDesign, I am also a licensed practitioner of Alternative Medicine and Acupuncture. Engaging patients to be active participants in improving their health, and identifying health problems through incorporating Observations of Daily Living as a diagnostic tool, is a tried and extremely useful method in the arena of holistic medicine. It is extremely exciting to see this concept enter the main stream through Project HealthDesign.

When a patient comes to me with a health concern, I interview them and obtain the necessary information to formulate a tentative diagnosis and to create a treatment plan. This interview process is an in-depth evaluation of just about every aspect of the patient’s health and lifestyle. The answers to these questions provide valuable input into the diagnostic process.  It is usually a voyage of discovery -- every symptom, and how those symptoms change through the treatment process, provide clues both to me and the patient on how to improve their health.

I am always surprised by how difficult it is for people to answer questions about themselves at the beginning of treatment. Questions like; “how often do you experience pain? have a headache? where do you feel the pain? how often do you feel sad? how often do you have a bowl movement? how often do you wake up during the night? do you have less energy after you eat certain foods? do you feel sick after you eat certain foods?” are often answered with “I don’t know.”  There are always exceptions, but most people aren’t that tuned in with what is happening with their bodies. No one has ever asked them to pay attention to these things. 

Just like everything else in life, to be good at something it takes practice. So people who work with me practice making observations about their daily lives. I often ask my patients to keep a journal. These journals  capture the same type of information captured by some of Project HealthDesign’s mobile applications.  Through the interview process, we identify and prioritize what observations they will track by identifying those that are impacting the patient most negatively. In my experience, when the process of discovery and the treatment plan itself is a partnership instead of a prescription, my patients are more likely to follow through with keeping their journals and following other recommendations.

I have the advantage of seeing my patients regularly and for more than 15 minutes at a time.  During these regular visits, patients get really good at answering my questions and start to notice patterns about their health on their own.  It is easy to see in my patients that a sense of empowerment comes along with actively participating in the discovery of what a healthy lifestyle is for them.  Also, by closely following changes in their daily lives it is easier for them to identify those things that improve their health or make it worse. For many patients, having a record of how their progression through treatment, including lifestyle changes, has positively impacted their health provides continued motivation for them to be their own advocate, and to keep making positive changes.

Functional innovation and knowledge innovation -- two key contributions of Project HealthDesign

Wendy Swanberg, Communications Coordinator, Project HealthDesign National Program Office

A few weeks back, I had the privilege of coordinating (and then watching) Project HealthDesign’s webinar, “From the iPhone to the EMR: Can patients’ personal health data improve their clinical care?”  The hour-long webinar provided a good, succinct summary of this seven-year project.  As someone who had recently joined Project HealthDesign as it enters its final months, I gained a lot of insight from the reflections of those who have shepherded the project from its inception.

I’d already come to understand the significance of Observations of Daily Living (ODLs), the main discovery to have emerged from the work of PHD’s fourteen grantee teams.  But until the webinar presentation by Michael Christopher (“Chris”) Gibbons, I didn’t appreciate how Project HealthDesign’s seven-year evolution fit into the larger portrait of technology-enhanced health care. 

Dr. Gibbons joined PHD’s National Advisory Committee in 2006 when the project was first defining itself.   “I have been able to be with the project from the beginning,” Gibbons said in the webinar, “and had the opportunity to look at not only the internal growing pains, but how the project has evolved through broader changes that were happening in our society . . ."  Among those societal changes are:

• Prevalence of chronic disease
• Burgeoning of the senior population
• Increasing longevity
• Rising healthcare costs
• Growing population of minorities, immigrants & underserved

Looking at our second round of grantee work from that perspective: The dwellSense project is relevant to every one of these changes.  Both the iN Touch project focusing on inner city teens struggling with obesity, and Estrellita’s work on care for premature infants, show how technology might help mitigate the cost and improve the effectiveness of health care among growing populations of the underserved.   And the research conducted by BreathEasy on people with asthma and Chronology.MD on patients with Crohn’s disease showed how attention to ODLs can make real contributions to the management of chronic conditions.

Yet beyond those real-time contributions, Dr. Gibbons pointed out how the project has helped to shape two broader trends in health care. “In my mind, as the Project HealthDesign project moved forward over these years with Robert Wood Johnson [Foundation], they really contributed in two main areas to help shape the broader trends.”   Gibbons calls these trends functional innovation and knowledge innovation.

Even before Project HealthDesign was launched, the healthcare industry had begun to embrace the function of personal health records (PHRs), primarily as repositories for data that clinicians found important.  “What we found is,” Gibbons said, “while that is important, there are other types of information that patients think important that traditionally and historically clinicians have not necessarily considered as important.“   The project’s timing is important here -- it was able to help define the function of PHRs while that function was still in flux.  “Project HealthDesign helped [clinicians] to broaden the perspective on the types of information, the types of data that could conceivably be important and that should go into a personal health record, and also pushed the envelope on the types of platforms and tools, devices to use to collect this information.” 

In the realm of knowledge innovation, Dr. Gibbons points to the project’s focus on Observations of Daily Living as “the key innovation in this area as we go forward.”  By folding ODLs into the healthcare mix, patients across the socioeconomic spectrum can enrich the quality of their health care.  “We had underserved populations, we had low-income populations.  We had elders, seniors, who many think are not in line in any way.” 

Through the work of fourteen teams of grantees, this seven-year project has employed technological innovation to address new healthcare challenges raised by changes in the socioeconomic contour of our population.  By doing so, Project HealthDesign has made important contributions to the future direction of modern health care. 

Dr. Gibbons' final comment was a perfect summary of the webinar, and maybe of the project over all as it enters its final few months:  “I think the Project HealthDesign project over time, in the context of these broader changes, has really now set the bar for developers to make vastly improved tools that will help both clinicians, and lead to better outcomes for patients.”

WIRED Health Conference: Living By Numbers

Katherine Kim, iN Touch Principal Investigator

What a privilege it was to attend the Wired Health Conference: Living By Numbers in New York City last week. Thanks, RWJF, for the invitation! Every talk offered something new, something surprising, or something provocative.

Something New

Nicholas Felton, a renowned graphic designer, talked about how he started producing the Feltron Personal Annual Report in 2006 because he wanted to tell the story of his life.  He evolved his process of data collection in three stages.  At first, he used “archeology,” leveraging data from records that already existed. These data included photographs, music downloads, subway rides. He found that 1% of his photos in 2006 included his cat. Next, he used “data hoarding,” collecting data expressly for the purpose of tracking.  During this two-year phase he collected every receipt and calendared obsessively. He became aware of how many “lethal doses of caffeine” he consumed in a year.  Now, he is “sampling” to help understand what he calls the intractable questions like what do I eat, how do I feel, who do I talk to, and what is my social network.  These data are difficult to collect constantly and often non-standard.  By analyzing free text comments through Mechanical Turk he discovered that he was 73% happy, or in his personal dictionary, “swell.”

Something Surprising

Nicholas Christakis of Harvard’s Human Nature Laboratory discussed social networks and how they can be more influential than mass media on people’s behavior.  His research on social networks related to obesity showed that it the condition was contagious: individuals whose immediate network included a friend, sibling, or spouse who became obese were more likely to become obese (57%, 40% and 37% respectively).  Even those who were one or two individuals removed were more likely to be obese. This was not the case for geographic neighbors.  This effect can also apply to positive health states.

Something Provocative

Jennifer Kurkoski and Brian Welle of Google’s human resources organization showed how asking big questions could lead to breakthroughs.  The question they asked was “What if working at Google added two years to your life?”  This led to their redesigning access to food on their campus from smaller plates in the cafes to placing M&Ms in opaque containers while putting healthier options in see-through bins.  Their early surveys are showing that employees like these changes and they are making healthier choices.

As we consider our next steps for iN Touch, I wonder: what if going to a high school with iN Touch added five years to a youth’s life? How could we evolve our approach to self-tracking of ODLs to identify the key signals?  And, what would a school need to leverage the social network that lives within it to make health contagious?

 

Learn more about the iN Touch project

Read more posts from the iN Touch group

Thoughts on Project HealthDesign at Health 2.0

Gail Casper, Deputy Director of Project HealthDesign

Although I was unable to attend several talks and demonstrations at the recent Health2.0 convention in San Francisco, I believe I had the “best seat in the house” while staffing the Project HealthDesign booth in the Exhibit Hall. Not only was I accompanied by the creators of the booth Joseph Pullen and Bob McKinnon of Galewill, I also had the opportunity to share time with several of the Project HealthDesign grantees and to talk with many of the Health2.0 participants who stopped by the booth. I was a bit surprised at the virtually constant flow of interested people stopping by, both during breaks and during sessions. 

Because our booth displayed a number of physical devices, many people first stopped by because they thought we were selling something.  But they stayed to learn more about our five projects, to view the devices they used and see the data displays created for both patients and clinicians. Matt Lee’s panel presentation on Monday generated considerable interest in the dwellSense project and the medication sensor; while others were intrigued more for the apps’ personal utility. People who had a newborn infant at home were particularly interested in the Estrellita app.

Others who stopped by were interested in learning more about Project HealthDesign in general and in exploring potential synergies with their own work.  The booth gave us a terrific opportunity to talk about Observations of Daily Living (ODLs) and to emphasize the importance of patient-centered data. 

Many people inquired about a next round of funding for Project HealthDesign.  Although disappointing to those who were asking, we appreciated the opportunity to let people know that Project HealthDesign will officially end in June, 2013.  While Project HealthDesign is coming to an end, we are confident that “our work” will continue, as more providers, developers and patients examine our project’s findings and build on our foundation. 

I would be remiss not to mention the grantees who so successfully represented their projects at the Health2.0 booth:

Matt Lee for dwellSense

Gillian Hayes and Sen Hirano for Estrellita

Lucia Rojas-Smith for BreathEasy

Kathy Kim and Christina Sabee for iN Touch

Marcos Athanasoulis and Nikolai Kirienko for Chronology.MD

Many thanks to all of them for the commitment of time, energy and intellect to this program.

Terrific attendance at Project HealthDesign webinar

Wendy Swanberg, Communications Coordinator, Project HealthDesign National Program Office

More than 200 people signed up for last week’s webinar, "From the iPhone to the EMR: Can patients' personal health data help improve their clinical care?” to learn about the latest work by Project HealthDesign’s grantee teams.  Co-hosted by Stephen Downs of the Robert Wood Johnson Foundation (RWJF) and Patricia Flatley Brennan of the National Program Office, the webinar set a wider lens on the growing interest in weaving patient-generated data into the matrix of clinical health care.   

Steve Downs explained that as part of RWJF’s Pioneer Portfolio, Project HealthDesign was created to stimulate innovation in the area of personal health records.  “We laid out a vision where your medical record would serve as a platform” he explained, “and then lots of third-party apps could be tailored to your specific needs.”  The project’s five research teams took that vision and created applications tailored for patients with chronic conditions, from asthma to obesity to Alzheimer’s disease.

Project director Patti Brennan described what might be the most significant finding to arise from the project, the discovery that information from patients’ daily lives -- data about things like diet, mood and stress level – can play an important role in managing health care.  These “Observations of Daily Living,” or ODLs, became central to the grantees’ research projects and represent a significant, new category of patient-generated data.  Brennan also introduced a short video where members of each project team illustrated their projects’ findings and challenges.

Project investigator Katherine Kim described how her team’s iN Touch application helped young people struggling with obesity to become more engaged in managing their health and lifestyle.   Dr. Stephen Rothemich outlined findings of his team’s BreathEasy project, showing how ODLs can provide clinically useful information and in some cases can lead to changes in diagnosis or therapy. 

Finally, National Advisory Council member Dr. Michael Christopher Gibbons spoke eloquently of the critical role personal health records can play in a rapidly evolving society, where new approaches are needed to tend to the needs of a growing population of seniors, minorities, immigrants and the underserved.  

If you registered for the webinar but weren’t able to view it, follow this link and log in with the email address used at registration.

Federal Government Finalizes Stage 2 Meaningful Use Requirements

Robert Belfort, Proje­ct HealthDesign Regulatory and Assurance Advisory Group, Manatt, Phelps & Phillips, LLP

The Centers for Medicare and Medicaid Services (CMS) and the Office of the National Coordinator for Health IT (ONC) recently released a final regulation setting forth the requirements for Stage 2 of Meaningful Use under the Medicare and Medicaid Electronic Health Record Incentive Program (the “Final Rule”).  In the Final Rule, CMS adopted a number of provisions that require eligible professionals and hospitals to increase their efforts to share data electronically with patients.  As a result, the Final Rule is likely to encourage greater patient engagement in health care, something the Robert Wood Johnson Foundation advocated in comments it submitted on the proposed rule.  Here is a relevant excerpt from RWJF’s comments::

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.

RWJF’s full comments are available here.

The chart below lists the “patient engagement” requirements in the Final Rule:

Stage 2 Objectives		Stage 2 Measures
Eligible Professionals (EPs)	Eligible Hospitals (EHs) and Critical Access Hospitals (CAHs)
Provide patients the ability to view online, download and transmit their health information within 4 business days of the information being available to the EP.		1.  More than 50% of all unique patients seen by the EP during the EHR reporting period are provided timely (within 4 business days after the information is available to the EP) online access to their health information, subject to the EP’s discretion to withhold certain information.   2. More than 5% of all unique patients seen by the EP during the EHR reporting period (or their authorized representatives) view, download, or transmit to a third party their health information
	Provide patients the ability to view online, download and transmit information about a hospital admission.	1. More than 50% of all patients who are discharged from the inpatient or emergency department (POS 21 or 23) of an EH or CAH have their information available online within 36 hours of discharge   2.  More than 5% of all patients (or their authorized representatives) who are discharged from the inpatient or emergency department (POS 21 or 23) of an EH or CAH view, download or transmit to a third party their information during the reporting period.
Provide clinical summaries for patients for each office visit		Clinical summaries provided to patients or patient-authorized representatives within 1 business day for more than 50% of office visits
Use certified EHR technology to identify patient-specific education resources and provide those resources to the patient	Use certified EHR technology to identify patient-specific education resources and provide those resources to the patient	Patient-specific education resources identified by the certified EHR technology are provided to patients for more than 10% of all unique patients with office visits seen by the EP during the EHR reporting period.   More than 10% of all unique patients admitted to the EH’s or CAH’s inpatient or emergency department (POS 21 or 23) are provided patient-specific education resources identified by the certified EHR technology.
Use secure electronic messaging to communicate with patients on relevant health information		A secure message was sent using the electronic messaging function of certified EHR technology by more than 5% of unique patients (or their authorized representatives) seen by the EP during the EHR reporting period.

Also of note to Project HealthDesign:  the Final Rule includes a new “menu set” requirement that eligible professionals and hospitals record a patient’s family history.

Stage 2 begins in 2014.  In the Stage 1 meaningful use regulations, CMS established an original timeline that would have required Medicare providers who first demonstrated meaningful use in 2011 to meet the Stage 2 criteria in 2013. The Stage 2 Final Rule gives providers more time to meet the Stage 2 requirements. A provider that attested to Stage 1 of meaningful use in 2011 would attest to Stage 2 in 2014, instead of in 2013.  Therefore, providers are not required to meet Stage 2 meaningful use before 2014.

Since the Medicare and Medicaid EHR Incentive Programs began in January 2011, more than 120,000 eligible healthcare professionals and more than 3,300 hospitals have qualified to participate –23,000 more than the federal government had hoped to enroll by now, according to the U.S. Department of Health and Human Services, which oversees the programs.

The Final Rule – along with a fact sheet describing it -  are available at  http://www.hhs.gov/news/press/2012pres/08/20120823b.html

Read more posts about legal and policy issues.

New faces at the National Program Office

National Program Office

As summer comes to a close, the NPO bids farewell and best wishes to Libby Dowdall, who stepped down in August to pursue other ventures. 
And welcome to our new communications coordinator Wendy Swanberg,  Ph.D. candidate in Mass Communication at UW-Madison, and to student assistant Mahdu Rajendran,  UW-Madison sophomore studying biochemistry and math.  They’ll be working to move Project HealthDesign forward into 2013.  Please feel free to contact Wendy with any communication questions, ideas, and feedback on the PHD website.  And stay tuned for details on our upcoming Webinar set for Sep. 25th!