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.

Onward, HealthVault (and Others!)

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

In June, as soon as Google mentioned its plan to discontinue the Google Health personal health record (PHR) platform, speculators began wondering whether Microsoft HealthVault would eventually follow suit. And once Microsoft and GE announced plans to spin their health groups into a new joint venture, the questions began to flow even more freely:

“It remains to be seen whether HealthVault will follow the Google Health PHR into oblivion.”
- “Microsoft GE Healthcare Joint Venture – A Sign of Weakness or Strength?,” The Health Care Blog

“… Microsoft did state that they’ll hang onto HealthVault, but even here, that is more likely a by-product of no one wanting to take on HealthVault rather than Microsoft’s strong desire to continue to try and build a viable, revenue-generating entity out of it. Do not be too surprised if, in a year’s time, HealthVault falls to the wayside much like Google Health did this year.”
- “Microsoft Bows Out of the Clinical Market,” Chilmark Research

In response, the HealthVault team met the questions head-on by holding their first “State of the Union” webinar on Jan. 13. The webinar, which was open to the public, focused on the HealthVault team’s vision for 2012, including plans for establishing a critical mass of users. Sean Nolan, chief architect of Microsoft’s Health Solutions Group, emphasized the team’s desire to see “people worldwide using online health tools to change health care.”

Several of our current Project HealthDesign teams are using HealthVault as a data repository and platform for participants to access their observations of daily living (ODLs) and other patient-generated data. That’s why we were interested to see where the HealthVault team would be focusing in the immediate future. Our teams have benefited from building on top of existing personal health platforms like HealthVault and TheCarrot.com. And although we don’t see these platforms as ends unto themselves, but rather as important components of a health data ecosystem (one that includes sensors and apps to record patient-generated data, personal health platforms to store and manage the data, dashboards and apps to review the data, and clinical EHR systems to bring data from patients’ daily lives into the clinical environment), there remains a critical and important role for platforms that accept and expose data from many sources.

We want to encourage everyone who’s working to advance this suite of health information tools, including HealthVault and TheCarrot.com, to hang in there. We know you’re ready to see more widespread interest and higher rates of consumer adoption. Frankly, we think the time for personal health platforms and a whole range of additional personal health tools is coming. We can’t wait to see consumers take charge of their health outside of clinical visits by diving into the health data ecosystem and putting the great tools you’re developing to work. Onward!

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.”

Patient Access to Lab Test Reports and the Era of Data-driven Health Care

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

As director of Project HealthDesign, a national program of the Robert Wood Johnson Foundation that aims to explore how personal health records (PHRs) and patient-sourced data might improve health and health care, I applaud this proposed rule. Allowing patients direct access to lab test reports is an appropriate and much-needed step toward equipping them to access, understand and act on their own health data. My work with Project HealthDesign has shown me that individuals are ready for an era of data-driven health care. Patients are hungry not only for access to lab test reports and clinical visit data, but also for access to more and different kinds of health data to use in conversations with their clinicians. We’re excited to see how patients, when equipped with their own health data, might share richer insights about their everyday health with clinicians and take charge of their health between clinical visits. That’s why we see this proposed rule as a big step for patients.

However, I also recognize that changing the flow of information is going to change the clinical conversation. Everyone needs to be involved in order to ensure that this process remains efficient and effective. That’s why I urge you to concurrently develop patient education tools that will allow patients to understand and minimally interpret lab test report data. At the same time, we must also work to prepare clinicians to participate in this new era of data-driven health care.

This comment was submitted to HHS in response to a proposed rule that would allow patients direct access to their lab test reports. To read the proposed rule, visit regulations.gov.

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Learn more about the proposed rule.
Read more health policy comments from Project HealthDesign.

How Can Clinicians Help Shape Health Policy?

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office 

Did you know clinicians can help guide federal conversations about health IT? Whether you’re a nurse, physician, health coach or other clinician, you have a unique perspective. Many clinicians are close to the patient experience and are able to translate their understandings of day-to-day health care operations into stories and statements that can impact policy-makers.

Project HealthDesign Director Patricia Flatley Brennan, Ph.D., R.N., shares four tips for clinicians who want to help shape health policy:

1. Scan for opportunities.
   Think about the patients and caregivers you interact with on a day-to-day basis. What types of public policy issues would impact their daily experiences? Visit regulations.gov to review policies that are currently open for public comments.
   
   
2. Develop partnerships.
   Contact your state nurses’ organization, an organization that advocates for patients with a particular care concern or a group at your clinical site. Ask these groups to help you understand what policy issues are important and timely.


3. Develop a message.
   Think about how new public policies might impact your patient population. Then state your message clearly and concisely.
   
   
4. Make your statement.
   Visit regulations.gov to leave a comment on a federal regulation, or write a letter to your state legislator to let him or her know how a proposed policy might intersect with your patient population’s needs.

To get started, consider commenting on a proposed rule regarding patients' access to test reports. Comments close November 14.

Examples Would Help Clarify When a Mobile Application Qualifies as a Mobile Medical Application

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

I want to thank the FDA for the opportunity to comment on the draft guidance on mobile medical applications. The guidance certainly aims to clarify what types of mobile applications qualify as mobile medical applications, what types qualify as mobile health or wellness applications, and what types qualify as mobile medical devices. The issue I want to be sure you address is that the line between mobile medical applications and mobile health or wellness applications is not yet sufficiently clear.

Through Project HealthDesign, our 14 research teams have developed mobile applications that allow patients with chronic diseases to manage their health in new ways. Beyond our project, many well patients are beginning to use mobile health or wellness applications to actively maintain their health. The language of this guidance must reflect this new reality when delineating between these two groups of mobile applications.

I also encourage you to provide more examples of the types of mobile applications that fall into each of these two categories. Developers must be able to easily identify whether their applications will be subject to regulation as mobile medical applications. Without additional examples of the types of applications that fall into each category, developers’ uncertainty about the guidance might stifle the incredible innovation we’re seeing in this space. Furthermore, I urge you to implement a transparent process for updating the list of examples over time as the technology evolves.

This comment was submitted to the FDA in response to their draft guidance on mobile medical applications. To read the draft guidance and submit your own comment, visit Regulations.gov. The commenting period ends Wednesday, Oct. 19.

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Learn more about the draft guidance.
Read more health policy comments from Project HealthDesign.

 
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What Is Patient-Centered Health Care?

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

"Patient-centered care requires a full engagement and a trusted alliance between an individual and a care team … where the best goals for the individual — or the best ways to meet those goals — are a negotiated conversation." -Patricia Flatley Brennan, R.N., Ph.D., Project HealthDesign Director

From its inception, Project HealthDesign has sought to bridge the gap between patient experience and clinician expertise in order to improve health and health care. Because health care and health IT typically attend to providers and their needs, we often find ourselves promoting “patient-centered” ideas: patient-centered health data, a patient-centered health information ecosystem or patient-centered communication, to name a few.

Watch the video below, featuring Project HealthDesign Director Patricia Flatley Brennan, to learn more about our vision for patient-centered health care:

Federal Health IT Strategic Plan Comment: Creating a Patient-Centered Health Information Ecosystem

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

I want to thank ONC for the challenging yet thoughtful goals set forth in the Federal Health Information Technology Strategic Plan. This vision for the future of health IT will surely encourage everyone from clinicians and provider groups to researchers and developers to think—together—how we might best lead the country forward into a new, more connected era of health that considers both clinical health care and health in everyday living.

Goals III and IV are the most relevant to my work with Project HealthDesign, a Robert Wood Johnson Foundation national project that examines the potential for PHRs and observations of daily living (ODLs) to help people live healthier lives and get better care. We believe that ODLs, or data that reflect patients’ perceptions of their everyday health, serve to inform individuals about their health and help them take action or make decisions about their health. Our five current project teams are also working to see how ODL data (e.g., information about pain, mood, sleep, etc.) could help inform better clinical decision-making by allowing clinicians a peek into patients’ everyday lives.

As is suggested in Goal III, inspiring patient trust in the health information ecosystem is vital. We must use many different approaches in order to educate individuals about the risks and consequences of opting in or out of sharing personal health information. Additionally, efficient mechanisms that would allow individuals to access, review and update their personal health information permissions are needed. Individuals must be able to verify that their wishes have been documented and implemented as desired.

When considering Goal IV, we must not forget that health occurs outside the context of the health care system as well as within it. Every day, factors outside the system impact individuals’ abilities to manage their health. Additionally, the term “patient-centered” can mean different things to different people. Perhaps the most common understanding is that the patient is the target of health care.  A more expansive definition of the term defines the patient as the source and center of all health. I find the latter to be a more appropriate definition given our collective mission to improve health and reduce the burden of disease management. We must plan for and implement health IT that encompasses both definitions.

Project HealthDesign has shown that individuals are ready to become involved in our work with health IT. For example, participants in our teams’ studies have been eager to help us improve our PHR tools, including applications that track observations of daily living (ODLs). We have also found that as the participants provided this type of feedback, they became more aware of how these tools could help them improve or manage their health.

As we work toward a modern health information ecosystem, we must take into account many different types of patient-generated health information. Some patient-generated health information results from the clinician’s desire to know information about signs and symptoms experienced at home. Patients’ individual perspectives on health create another type of patient-generated health information: observations of daily living (ODLs). Health data generated by caregivers (e.g., parents of infants and caretakers of the elderly) are a third type of patient-generated data. Environmental factors that affect one or more people (e.g., pollen count, particulates in the air, radiation levels) comprise a fourth category.

Our project teams are finding that it is important to incorporate patient-generated data into the clinical workflow in ways that minimize the burden on the clinician. Early feedback from one of our teams suggests that clinicians do value patient-generated data, but that the ODLs a clinician values might be different from the ODLs a patient values.

Truly patient-centered care has the potential to revolutionize health care from both the patient and provider perspectives. Capitalizing on this new paradigm will require new processes and tools. We must remember the power of an individual’s unique perspective on his or her own health and equip patients to engage in these types of conversations as we plan toward the future of health IT.

This comment was submitted to ONC in response to the recently released Federal Health IT Strategic Plan. To read the Strategic Plan or other comments on the plan, please visit the Health IT Buzz blog.

Listening to Health in Everyday Living

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

About three years ago, our Project HealthDesign project teams began hearing something odd and unexpected from the patients involved in their user-centered design activities — the sound of health in everyday living! Health doesn’t come labeled in the professional, clinical-speak of signs and symptoms. It sounds like a family’s laughter, strained dinner conversations or the peaceful snoring of a parent who’s sick. It sounds like the birds one hears while taking an especially long walk or the raspy breathing that precedes an asthma attack. It sounds like the words an elderly woman uses when she explains to her physician that she “just doesn’t feel right” after taking her medication.

We’ve called the phenomena these sounds reflect “observations of daily living,” or ODLs. ODLs are sensations, behaviors, environmental exposures, thoughts and social experiences that serve as clues to health and health activities. We have been trying to better understand the stories they tell.

We’ve learned that with ODLs, there is a jargon or rhythm to the sound of health, and that it doesn’t sound at all like the sounds of health care. What it does sound like may be idiosyncratic, or unique for each patient. Like the more familiar signs and symptoms, ODLs provide snapshots into a person’s health situation. However, unlike signs and symptoms, which have a scientifically proven link to an underlying health process, ODLs represent what a patient pays attention to; this is why ODLs  are so important for patient-centered care.

Our five current Project HealthDesign project teams are hearing about a whole new set of ODLs. Listen to what they are hearing:

The Embedded Assessment team at Carnegie Mellon University is using sensors embedded in household objects such as coffee pots, telephones and pill boxes to monitor how well elders are doing everyday activities. Understanding how well — or how poorly — an elder performs routine tasks may provide the early warning signals needed to bring help in a timely fashion. The sensors, if fired in the anticipated sequence, will show that the person is handling things just fine. However, sensors firing out of sequence or not at all suggests that some type of cognitive disruption is occurring — perhaps the elder can’t remember the steps to making coffee, or has forgotten to take meds at a certain time. Of course, one misstep doesn’t equate to profound confusion. That’s why we think of ODLs as sentinels, not signals. The ODL here is the firing sensors; this ODL must be interpreted and validated in order to serve as an indicator for action.

The iN Touch team from San Francisco State University is reaching out to teens who are both obese and at risk for depression. This group is going to use camera-equipped cell phones to prompt the teens to take photos of their food, record their menus on the spot and to rate things like: feelings, interactions with others, and activity levels. The ODLs here might sound like nutrition, mood, social activity and using the phone to capture information in real time. This information will be stored and reviewed later with a health coach, and could serve as the key for real success in weight management.

Again, awareness of ODLs is only part of the story. The other part is looking for patterns in the clues. It’s a lot like the sound of a crying baby — crying is an ODL, but distinguishing between the sound of a distressed cry and a bored cry means the difference between responding with comfort or stimulation. And, speaking of babies crying, we’ve wondered whether ODLs exist if you can’t hear them or know what they mean. But of course they do!

The FitBaby team at the University of California, Irvine is working with parents and young infants. They’ll be looking at how things like the number of diaper changes or the sound of a mom singing to a baby give clues to the quality of the parent-child relationships and the health of the baby. They’ve created a Mind Garden to appraise parents’ stress levels, and are using photos of baby poop to evaluate the adequacy of baby’s nutrition.

Over the next few weeks we’ll be introducing you to more sounds of health in everyday living. Join us on the journey to decode these clues and figure out how to use them to improve health!

Read more posts about ODLs.

Can Meaningful Use Become More Meaningful for Patients?

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

Because so many of the Stage 1 meaningful use criteria apply primarily to professionals’ uses of health information technology (HIT) in clinical care settings, Project HealthDesign is pleased to see criteria proposed in Stage 2 that would allow patients to become beneficiaries of meaningful use of HIT.

Meaningful use shouldn’t focus exclusively on electronic health records (EHRs) and clinical care settings. It’s time to ensure that the benefits of HIT meaningful use extend to the everyday lives of patients and families.

We call for accelerating the criteria for meaningful use Stage 2 that would lead HIT to:

1. Exchange health data back and forth between EHRs, which house clinically originated data, and PHRs, which house patient-originated data. Health data arise from a variety of sources. Our work on Project HealthDesign has shown that patients value health data that they themselves define and generate. These types of health data, or observations of daily living (ODLs), can include data related to mood, pain levels and even sleep quality.
   
   
2. Allow patients to invite trusted others, including family members, friends and surrogate decision-makers, to access selected health data. The coordination of patient care would benefit from this type of shared access, which engages patients, clinicians and other individuals designated by the patient while also allowing each patient to maintain the level of privacy he or she desires.

Now is the time for a broader, bolder approach to meaningful use. Patients are relying on HIT professionals to ensure that the bilateral exchange of health data between EHRs and PHRs is meaningful for both patients and clinicians. For more information, please read the full Project HealthDesign Stage 2 meaningful use comments.

Related resources:

• View the full draft of proposed Stage 2 meaningful use criteria [pdf].
• Read Project HealthDesign national advisory committee member John Halamka’s comments.