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What’s Engagement Now? Experts Discuss Emerging Challenges

Sarah Greene
Wednesday, May 9th, 2012

This interview with Sarah Greene is the ninth in a series of brief chats between CFAH president and founder, Jessie Gruman, and health care experts—among them our CFAH Board of Trustees—who have devoted their careers to helping people find good health care and make the most of it.

Sarah Greene is a publishing entrepreneur and soil microbiologist with a deep interest in patients’ participation in their care – and particularly in the research process.  She is the co-director of Cancer Commons, a nonprofit in Palo Alto, CA that is developing a new approach to translational cancer research that puts the patient at the front of the research process.

Extreme Openness: Sparking Progress through Patients, Researchers & Clinicians

 

Gruman: Building communities of engaged stakeholders is a theme that runs throughout your career.  Tell me about the different ways you have worked on this.

Sarah Greene:  I discovered somewhat by accident – early in my career — that science makes faster progress and produces better results if more people with a range of different expertise are brought together. In the past 10 years, I’ve extended this belief to patients’ participation in their care.

Gruman: How did you move from working as publisher focused on basic science to health care?

Sarah Greene:  I helped create innovative ways to share and develop molecular biology lab protocol manuals across diverse organizations and settings in the first company I founded, Current Protocols. I got into the health business by trying to recreate this approach with Praxis Press, a company that provided point-of-care online information to clinicians. We wanted to create a product with more usability, rather than just posting an existing textbook. For each health condition, we developed patient-friendly descriptions of the clinical information that could be customized and printed out by doctors.

To keep the content updated, we needed to scan the scientific literature for important findings, so we started a news service and worked with clinicians to try to define and link to good evidence.  We also published a Web-based magazine that included patient narratives and articles about the culture of medicine.  We thought it was important to bring the patient experience to the clinicians and researchers, even though this was before people were talking about empowered patients.  Anyone could read it – you didn’t have to subscribe and it became pretty popular with a lay audience in addition to physicians.  My business partner and I sold this company to Thompson Healthcare in 2002.

Gruman: And didn’t you work on the very early version of The New York Times Website?

Sarah Greene:  Yes. I was hired to develop the Times’ deeper Web content in health and helped launch the Well blog with Tara Parker Pope in 2006.  By this time, people had really started to want to talk with each other and the broader community about health and health care.  The world was a different place.  Take, for example, the Patient Voices feature – it’s a simple slide show – coupled with an audio track of five or six patients describing their struggles with a single condition.  It’s amazing how powerful those patients are!  I could see that this was just a tiny piece of what you could do to include patients in the equation.

After I left The New York Times, I spent a while as the founding managing editor of the Journal of Participatory Medicine  (JoPM).  It was there – actually, through putting together the inaugural issue with you, Jessie – that I started to see the full potential of patients participating in their care.  There were some powerful articles in the JoPM as we attempted to define this emerging field: one by Gilles Frydman on patient-driven research, another by Richard Smith on peer review and bias in publishing. Around that time I wrote an editorial that crystallized my thoughts on patient involvement, “Participatory Medicine as Revolution! Think Critically! Communicate!” And yet I despaired that this was reaching an audience that already was on board with participating in their care.

Gruman: And what are you up to now?

Sarah Greene:  Cancer Commons is a nonprofit translational medicine network that links cancer patients, clinicians and scientists in “rapid learning communities” with the goal of developing precision therapies faster and getting them to patients faster. Central to the idea is that patients are treated as partners rather than simply as subjects.  We hope that by closing the loop between patient insights and research it will be possible to speed the learning process and achieve better outcomes.

It works like this: Editorial boards made up of leading clinical researchers in each cancer curate molecular disease models (MDMs) that identify the most relevant tests, treatments and trials for each molecular subtype of that cancer. Patients and clinicians access the MDM through Web-based applications and content to inform their decisions about testing and treatment. More data is pooled from academic institutions conducting trials, clinical case studies, and patient-donated data and surveys, to interpret and discuss in forums that engage all the stakeholders.  This collaborative conversation based on large and diverse datasets will validate or refute the current MDM. The editorial boards reach a consensus about the evidence under discussion and update the MDMs accordingly.  So patients and clinicians always have access to the latest clinically actionable information.

We have seen some remarkable examples of patients joining with researchers to catapult research forward. The recent Sage Bionetwork Congress highlighted a few impressive examples of how researchers and patient groups are taking on this multiple-stakeholder model.  For example, Kathy Guisti spoke about founding the Multiple Myeloma Research Foundation, after being diagnosed with the disease, and their successes over 10 years: building a tissue bank, collecting over 3,500 bone marrow samples, collaborating with researchers to sequence the myeloma genome, and networking with 16 clinical centers to initiate 40 trials, with 4 new drugs FDA-approved and nearly 2 dozen more in accelerated trials.

We think there are many more people with cancer who are actively engaged in their care who would welcome the opportunity to participate in a meaningful way with researchers.  Many leading clinical researchers too have realized that collaborating on datasets and with patients is now possible with internet and sequencing technologies and that collaboration may be a necessity to make real progress in drug discovery. We hope, at Cancer Commons, to build the tools and provide the linkages that will facilitate collaboration and speed research.

I just read an inspiring book by Michael Nielsen – Reinventing Discovery: The New Era of Networked Science – which describes the power of crowdsourced data and expertise in the fields, primarily, of math and physics. In biology of course, the human genome project is exemplary, and Nielsen provides a roadmap for how these collaborations have succeeded (see his Ted Talk).  Here’s a great quote from the book that captures this spirit:

In an ideal world, we’d achieve a kind of extreme openness. That means expressing all our scientific knowledge in forms that are not just human-readable, but also machine-readable, as part of a data web, so computers can help us find meaning in our collective knowledge. It means opening the scientific community up to the rest of society, in a two-way exchange of information and ideas.

Thank you, Jessie, for the opportunity to discuss my latest project!

Related Links:

What’s Engagement Now? Experts Discuss Emerging Challenges series:

Interviews with CFAH’s Ziff Fellows on the challenges of patient engagement:

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What’s Engagement Now? Experts Discuss Emerging Challenges

Kalahn Taylor-Clark
Wednesday, April 18th, 2012

This interview with Kalahn Taylor-Clark is the eighth in a series of brief chats between CFAH president and founder, Jessie Gruman, and health care experts—among them our CFAH Board of Trustees—who have devoted their careers to helping people find good health care and make the most of it.

Kalahn Taylor-Clark, PhD, MPH, currently serves as the director of health policy at the National Partnership for Women and Families (NPWF). Her primary responsibilities are in shaping and implementing the policy agenda for its major initiative, the Campaign for Better Care, and providing strategic policy support on a range of activities related to delivery system reform including payment reform; quality measurement; reduction of health disparities; consumer engagement and promotion of patient-centered care delivery; and the effective use of health information technology.

 

Engaging Patients and Families as Partners


Gruman: Your current position as Director of Health Policy at the National Partnership for Women and Families requires you to know about a lot of different topics related to people’s engagement in their health care.  How has your background and history prepared you for this role?

Kalahn Taylor-Clark:  Well, I have long been interested in how people participate in their health and health care, and by orientation, I am a structuralist, meaning that I am interested in how public and private policy can make it possible for most people in this country to take good care of themselves.

Gruman: So, for example, what skills and knowledge did your education offer?

Kalahn Taylor-Clark: I completed a PhD in Health Policy and continued as a Kellogg Health Scholar at Harvard University – where I worked with Drs. Robert Blendon and Vish Viswanath in the areas of survey research, media framing, and public opinion.  Apart from the qualitative and quantitative skills I gained, one of the most important lessons I learned there was how important it is to understand how people – the public – understand the health and health care problems they face, and how we might influence the ways in which people consider addressing these problems.  This inquiry is particularly important when considering the health and health care problems of our most vulnerable populations, namely: the poor, older, and racial/ethnic minority groups in this country – who face a disproportionate burden of unequal health care access, worse health care quality, and worse health outcomes.  It is my belief that if we can create a system that works for these most vulnerable groups, we can create a system that works for all.  That said, framing the issues of health inequalities is a delicate dance, and one that importantly requires an understanding of how people think about these problems, and who they think should be responsible for addressing them.

Gruman: Then you headed to Brookings.

Kalahn Taylor-Clark: Yes. As a Research Director, I led the Patient-Centeredness and Health Equity Portfolios in the Engelberg Center for Health Care Reform. These portfolios sought to: inform regional, state, and national practices for advancing priorities for patient-generated measurement in new delivery and payment reform models; incorporate consumer perspectives into strategic planning of new delivery reforms; focus on social determinants and population health in health care reform models; and identify innovative ways to collect and report data to measure and address health care disparities.  For the latter effort, we convened a multi-stakeholder group in Massachusetts to guide the Commonwealth in developing requirements for health plans to acquire race/ethnicity data from members. This was my first experience in affecting, from the beginning, the development and passage of a law that could potentially affect millions of peoples’ lives.  Still, the law only affected health plans’ reporting of race/ethnicity data, it did not extend to having to do anything about disparities once they acquired the data.  This experience taught me that we can make incremental changes to shape policy, but if we do not engage consumers, patients, and family members in health care processes, we will not be effective at eliminating inequalities and improving health for all.

Gruman: And so you moved to the National Partnership for Women and Families, which is a leading non-profit consumer organization that works on this issue, in addition to a number of others.

Kalahn Taylor-Clark: Yes – The Partnership is doing a lot of work to ensure that health care consumers – patients and family caregivers – become active, effective members of health care governance structures, system redesign, and individual clinical interactions in communities.   For example, we have worked at the Federal level to assist the Centers for Medicare and Medicaid Innovations (CMMI) programs to effectively engage consumers and promote patient-centeredness criteria advanced by the Accountable Care Act (ACA).  Further, we have worked with state and regional communities to advance effective consumer engagement in the (re)design of delivery systems, seeking to enhance partnerships between providers/clinicians and patients/family caregivers, in order to advance patient centered care.

I see real transformation taking place, however, only when three levels of consumer engagement are advanced to support patients and family caregivers as collaborative partners in the continuum of their own care and health.

At the clinical level, collaborative engagement is driven by a shift in the mindset of clinicians, who must view their patients and family caregivers as partners in the care that is delivered.  That is, as partners, clinicians and patients/family caregivers must feel that we each have a stake in the outcome; we each have agency, i.e., there are things we can do; and we each have a responsibility to act on that agency.

The second level is within individual systems, whether a hospital and its affiliated practices or a larger group, like an Accountable Care Organization.  There, it’s not only including patients and families (and other community stakeholders) in partnerships at the clinical level, but in system (re)design and governance.  That is, creating a system with consumers that is meant to be effective for consumers.

The third level is consumer engagement in state and Federal legislation and regulations (whether health care or broader social policy) that in the end, make it possible for people to effectively care for themselves and their loved ones.  For example: The Affordable Care Act (ACA) provides a significant opportunity to improve access to health insurance and services for millions of Americans.  In the current economic climate we are increasingly conscious of the need to promote the effective and efficient use of health care services, reduce health care costs and improve preventive health. We believe that providing workers with access to paid leave policies, including job-protected paid sick days and family medical leave that workers can use to recover from routine illnesses and seek preventive care and to address serious health conditions of a family member, will be critical to advancing these important objectives.

Related Links:

What’s Engagement Now? Experts Discuss Emerging Challenges series:

Interviews with CFAH’s Ziff Fellows on the challenges of patient engagement:

 

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What’s Engagement Now? Experts Discuss Emerging Challenges

Janet Heinrich
Wednesday, April 4th, 2012

This interview with Janet Heinrich is the seventh in a series of brief chats between CFAH president and founder, Jessie Gruman, and health care experts—among them our CFAH Board of Trustees—who have devoted their careers to helping people find good health care and make the most of it.

Janet Heinrich, DrPH, RN, is the associate administrator of the Bureau of Health Professions in the U.S. Department of Health and Human Services’ Health Resources and Services Administration (HRSA). The Bureau provides national leadership on the planning, development and implementation of strategies and initiatives to expand and improve health professions’ education and training.

Expanding the Primary Care Workforce

 

Gruman: Your career has been very diverse but has always focused in some way on enabling people to benefit from the health care services available to them.  Describe how your current position helps individuals participate positively in their health care.

Janet Heinrich:  As the Associate Administrator of the Bureau of Health Professions, my focus is on expanding the primary care workforce. Primary care is the entry point into health care for most people. It provides the continuity of care over the lifespan. From that standpoint, it is the most familiar, trusted experience people have with health care.

These days, people talk about primary care and medical homes and in the next breath they talk about patient centeredness. I am concerned that people adopt these phrases and then forget what they mean.

I think that HRSA funding can do a lot to help professionals stay focused on the practical and clinical and organizational details of patient-centeredness and incorporate them into professional training – and retraining – so that care in this country is truly effective in involving individuals in caring for themselves.

Gruman:  What’s your sense of how that’s going?

Janet Heinrich:  Our focus is on encouraging institutions applying to receive Federal funds to support the development of the primary care work force and address patient-centeredness.  I’ve been intrigued to see that in pediatrics, internal medicine and family medicine, many of the institutions really do understand what it means to be patient-focused.  Those organizations know that they have to provide patients and caregivers with information and that health care professionals need to have the time to listen, to explain and to explore patient preferences. They try to organize care so that primary care providers are in a position to know the individual and the family.  They train professionals to guide their patients through health promotion but also to assist them in other diseases and conditions – sorting through the best mode of treatment for example.

Gruman: So where do you see these efforts falling short?

Janet Heinrich:  People working in primary care are working hard to keep their patients healthy and sometimes don’t have the time to realize the incentives for focusing on care coordination right now.  But we know this is incredibly important so we are seeking the best ways to incentivize them.

Gruman: With such a broad mandate – to improve the size and skills of all of the primary care workforce – you probably have many different entry points to get professional schools and researchers to figure this out.  Tell me about some of them.

Janet Heinrich:  We support nursing programs that focus on advanced education – primarily nurse practitioner programs.  Our nursing programs target nurse practitioners in primary care with support to build their skills.  We also provide educational support for minority and disadvantaged nurses.

We have a major investment in continuing education for the existing workforce in official public health agencies.  Very often, those professionals should be out in the community, in homes and workplaces.  But as we know, many state health department budgets have been cut and so it’s been critical to provide educational support to those who remain and who are likely to have expanded responsibilities.   For instance, we want to make sure that we reach administrative assistants who keep records and nurses with associate degrees who may be taking on the responsibilities previously assigned to trained epidemiologists, doctors or laboratory people.

Gruman: What other kinds of efforts are you making that focus particularly on building the patient-centeredness of primary care?

Janet Heinrich:   We need more people prepared to provide behavioral health services – to provide services for people with mental illnesses like depression, bi-polar disorder and schizophrenia. We are working through the National Center for Health Workforce Analysis, looking at how many psychiatric nurses, psychiatrists, psychologists, clinical social workers and counselors are currently practicing.  We’re doing some work with the Department of Labor and also with the Department of Education, which tracks accreditation.

This year HRSA will fund a new program to build the behavioral health workforce. We have about $10 million that will be used to fund psychologists and clinical social workers to work with individuals who are currently underserved and at high risk, and in particular, will provide services to returning veterans.

Gruman: You also have a number of programs directed specifically at training primary care physicians, correct?

Janet Heinrich:   We are always looking for innovative approaches for patient-centered care that can be replicated.  In Vermont, for example, the state has a program that uses care coordination teams to link individuals to clinicians in medical homes.  Care coordination is done by teams of people from different backgrounds and expertise and is lead by a public health nurse working with primary care providers to make sure that individuals and families obtain the care they need.

There is encouragement within HRSA’s community health centers program to encourage Federally Qualified Health Centers (FQHC) and various community health programs to meet the standards and criteria of medical homes. Legislation was recently passed that allows HRSA to reverse its usual focus on teaching hospitals.  This new legislation allows us to support residents in community-based settings that hold accreditation for the residence program. This could be an FQHC or another type of community-based program. Those residents have to do hospital rotations, but the new concept is more of a community focus, more of an ambulatory care focus. These residents don’t spend their whole time doing hospital rotations. We now have 22 settings (some with academic affiliations, although not all); all of which are accredited programs with the purpose of training medical residents in community settings.

So, for example, we are supporting Teaching Health Centers at Northwestern University, which is academic but based in FHQCs; the Lone Star Community Health Center in TX; the Institute for Family Health in New York City; the Greater Lawrence Health Center in Lawrence, MA.  And we have a free-standing program in Boise, Idaho; their academic link is with the University of Washington.

We are doing a thorough evaluation of Teaching Health Centers and this new approach to residency training. Does it cost more?  Less?  We set this up so we really can learn about how effective this program is.  We are trying to develop the gold standard, so we want to know about the quality of the programs. We want to understand more about what kind of mentoring goes on, to understand the focus of the curriculum of these programs and we plan to track where the graduates go to practice.  Do they stay in rural areas?  Do they remain in FQHCs?  The evidence we have to date says that they do.

Gruman: Do you have any content-specific training programs that are relevant to patient engagement?

Janet Heinrich:   I would put our integrative medicine initiative in that category.  So many people use alternative and complementary medicine like herbs, mindfulness, colonics in the U.S.  They are willing to pay their own money for it without scientific evidence of its effectiveness.  We believe that primary care clinicians, particularly, need to understand its use, the evidence for its effectiveness and the potential for harmful – or beneficial – drug interactions.  This initiative is in the appropriation for 2012. There is language in the bill that directs us to put out grants to medical residency programs to encourage the inclusion of integrative medicine.  We sought help from the National Centers for Complementary and Alternative Medicine at NIH to define the universe of what counts as integrative medicine.

We truly believe that building the size and robustness of the primary care workforce with a clear eye trained on training clinicians to be responsive to the needs of individuals and encouraging of their role in their own care will have a significant impact on the health of the nation for decades to come.

Related Links:

What’s Engagement Now? Experts Discuss Emerging Challenges series:

Interviews with CFAH’s Ziff Fellows on the challenges of patient engagement:

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What’s Engagement Now? Experts Discuss Emerging Challenges

Maulik Joshi
Wednesday, March 21st, 2012

This interview with Maulik Joshi is the sixth in a series of brief chats between CFAH president and founder, Jessie Gruman, and health care experts—among them our CFAH Board of Trustees—who have devoted their careers to helping people find good health care and make the most of it.

Maulik Joshi, DrPH, is president of the Health Research & Educational Trust (HRET) and Senior Vice President for Research at the American Hospital Association (AHA).  As the independent, not-for-profit research and educational affiliate of the AHA, HRET conducts applied research and performance improvement in improving quality and patient safety, reducing costs, eliminating health disparities, improving leadership and governance, payment reform and care coordination.

Enabling People’s Engagement in their Hospital Care

Gruman: What is the role of HRET with regard to people’s engagement in their health and health care?

Maulik Joshi: The participation of individuals and their caregivers in hospital care has taken on increasing importance for us in all our activities as we have come to realize how central those attitudes and behaviors are to the delivery of quality care.  

We have used the six aims from the IOM Quality Chasm report as the framework for our activities since it was published.  I would say that we have done a pretty good job of addressing all of them, although equity and patient-centeredness will require us to redouble our efforts.  We have started this process with some initial reports, but this will require sustained attention over time to change the culture of the hospital and health care delivery overall. 

Gruman: How do you approach this whole issue of people’s participation in their care in the hospital? That is a somewhat rarified situation – most of us are mostly not in a hospital when we are ill, and when we are, we are often too sick to actually be knowledgeably involved in our care, at least in the conventional sense.

Maulik Joshi: Without a doubt, a hospital stay is just one part of the continuum of health care.  Whether we are in a doctor’s office, getting a home health visit, in the hospital or at home, there are opportunities to better engage patients and families in their care.  In working with our hospitals, we know we have an opportunity to engage patients and families at the point of care.  Part of the focus is what do we do at the bedside when a professional or staff member is talking with a patient or caregiver. And then there are the organizational or the environmental aspects: how to make it easier for patients and their caregivers to manage what can be a pretty difficult time.

We’ve been trying to identify better practices. There are some that we are testing and learning from and we need to do more of that.  Opening up visiting hours, for example, is a practice that has proven to have positive benefits to patients, families and outcomes, though implementing this is not always easy.  All hospitals should make it as comfortable and possible for people to be with their family members and loved ones.

Gruman: What are some other changes you are looking at?

Maulik Joshi:  We are doing some work on bedside change of shift reports, for example.  How do clinicians communicate information about a patient from one shift to the next and how can patients and families be involved, both as observers and as participants in that process?  We are experimenting with this now, learning how to fit it into the daily operations of different kinds of units. 

AHRQ has funded AIR to develop some materials that can be used to facilitate patient and caregiver participation in shift changes and we will use those materials to guide us with future research and guidance on this and on other areas, such as discharge planning.

Gruman: It strikes me that even those two changes represent a monumental shift in where and how people are able to participate in their own care and the care of those they love.

Maulik Joshi: You are right about that.  Little changes can make a big difference both practically and symbolically.   In the past, there was a stereotype of the patient as the passive recipient of our professional ministrations in hospitals.  The shift from the status quo to what Don Berwick characterized as a “Nothing about me without me” culture represents a huge organizational shift and requires corresponding shifts in individuals’ attitudes and behaviors…on the part of administrators, clinicians and staff, as well as patients and caregivers.

Gruman:  You are right – it represents a really fundamental change in assumptions about roles and responsibilities. How are you approaching it?

Maulik Joshi: At the organizational level, we say it is about leadership.  More leaders are becoming more convinced that this is important…they are looking at the facts on the ground and are realizing that they must work actively to make it possible for others to change.  You can see it in doctors’ practices too: there is greater acknowledgement that chronic disease requires a different kind of care, that true shared decision making makes sense for patients.

The reality is that health care requires teamwork more so today than ever before. There are thousands of clinicians and staff members working today who are going to need to learn how to effectively work as a team while maintaining the scientific or other expertise of their own discipline.

We have an AHRQ-sponsored initiative on teamwork training that focuses on communication skills and how to ensure patient safety. The aim is to build skills that are important.  We’re finding that it takes time but that people can actually learn how to do this and then act differently and produce different outcomes for their patients.

We also see the need to address people’s engagement in their care in the physical arrangements in hospitals.  As we plan and design and construct facilities for future health care, we are starting to ask “Is there a space for group visits? Where do families and doctors meet with the patient together?” It’s hard enough to make a change of this magnitude in an engrained culture but to make it in a physical environment that doesn’t accommodate it – one that is make-shift or make-do or temporary – we’re going to have to do better than that.

Gruman: These efforts are really timely, but like you, I believe it’s going to take a lot to make meaningful cultural changes.  What’s your level of optimism about this?

Maulik Joshi: From the hospital perspective, interest and readiness have never been higher.  We know we can’t go on with the status quo.  A singular focus on the efficiency of care or the quality of care will not lead to the improved outcomes that we – and the American public – expect.

If patients and families are not an integral part of our improvement efforts, we will fail. We don’t know all of the right answers now. We do know, however, that no one size fits all: no one approach to making hospital care responsive and tailored to patients’ needs is going to work in every setting. This poses both a challenge and opportunity. 

We have some immediate concerns to address, but we also have to prepare today for concerns on the horizon.  For example, in 2042, minorities will be the majority of the population.  How do you continue to deliver excellent care as your patient base and community rapidly changes?

We need to build a culture that is sufficiently flexible to address this and other challenges, and we need our multidisciplinary workforce to implement the specific practices and procedures and approaches – like team care and multidisciplinary care planning – with patients and caregivers.  We are making good headway on the specifics, but culture takes time: we have a workforce in place and generations of new professionals joining every year who are increasingly trained to deliver care that better meets patients’ needs.  I know the momentum is on the side of meaningful change.  Some may consider this an anxious time in health care.  I think it is the most exciting time knowing that we can fundamentally improve how providers and patients work together to improve health care.

Related Links:

What’s Engagement Now? Experts Discuss Emerging Challenges series:

Interviews with CFAH’s Ziff Fellows on the challenges of patient engagement:

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