Category Archives: Voices from the Field
Chris Feudtner, MD, PhD, MPH, is a pediatrician, epidemiologist, historian, and ethicist at The Children’s Hospital of Philadelphia (CHOP) and professor of pediatrics at the University of Pennsylvania. He is an alumnus of the Robert Wood Johnson Foundation Clinical Scholars program.
Living in a situation beyond almost-unbearable imagination: This is the reality that children with life-threatening conditions and their parents confront, and that the rapidly emerging field of pediatric palliative care seeks to address with compassionate and specialized medical and psychosocial expertise.1
A bit of background: just over half of the 45,000 children who die in the United States each year are infants, who often die within hours of their birth. Others die after traumatic injuries, usually quite suddenly. And a substantial proportion of the children die after a prolonged illness trajectory, due to a wide range of chronic conditions, ranging from cancer to congenital anomalies to neurodegenerative diseases. Most of these children spend days or weeks in hospitals, with frequent hospitalizations, and with the likelihood of hospitalization going up as the condition worsens.
To meet the needs of these patients and their families, many children’s hospitals in the United States have created dedicated pediatric palliative care teams. These interdisciplinary teams—composed of physicians, nurses, social workers, child life and art therapists, chaplains, and other specialists—pursue three core tasks on behalf of these patients. First, they manage pain and other symptoms, using both pharmacologic and complementary methods. Second, they support patients and parents in the often overwhelming process of receiving medical information and making treatment decisions. Third, they help coordinate care both across specialty disciplines within the health system, and across different sites of care, from the hospital setting to home or other residential sites, often in partnership with hospice or home nursing. All of this is done in coordination with the patient’s primary medical or surgical team2—palliative care adds and never subtracts.
In this interview with the Robert Wood Johnson Foundation's Steve Downs, SM, historian Keith Wailoo, PhD, discusses how we define our own cultures of health and shares how deeply held cultural narratives influence our perceptions of health. Wailoo is jointly appointed in the Department of History and the Woodrow Wilson School of Public and International Affairs at Princeton University. This video is part of the RWJF What's Next Health series. Also check out the accompanying infographic.
Infographic: When 'Good' Data Goes Bad
Good data can play a critical role in answering some of our most vexing questions concerning health. But history shows us that data is never collected or analyzed in a vacuum. Instead, the culture of the times acts as a lens that can either obscure or reveal truth. Here is one example, looking at the history of data collection concerning cancer and race.
Kathy Apple, MS, RN, FAAN, is CEO of the National Council of State Boards of Nursing and an alumna of the Robert Wood Johnson Foundation (RWJF) Executive Nurse Fellows program (2006-2009). She received the Ben Shimberg Public Service Award from the Citizen’s Advocacy Center.
Human Capital Blog: Congratulations on receiving the Ben Shimberg Public Service Award from the Citizen’s Advocacy Center! What does the award mean for you and for your work at the National Council of State Boards of Nursing (NCSBN)?
Kathy Apple: It is quite an honor for both NCSBN and myself, as this recognition comes from an independent, objective organization that advocates for the public interest, effectiveness, and accountability of health care licensing bodies. It confirms that NCSBN is on the right track in supporting its members, the nurse licensing boards in the United States.
HCB: The award is named for a man who is considered the “father” of accountability in professional and occupational licensing. How are you carrying out his mission at NCSBN?
Apple: Dr. Shimberg was an expert on competency testing and challenged all licensing boards to ensure competence assessments meet the highest psychometric and ethical standards. He urged licensing boards to continuously examine how to improve testing procedures. Dr. Shimberg challenged licensing boards to improve communication to applicants and consumers, to keep data and accurate records on all board business, and be accountable for their own performance. He advocated for licensing boards to conduct research in all aspects of regulatory functions. He encouraged collaboration between and among licensing agencies. He challenged all regulators to have and follow their own code of ethics. Dr. Shimberg really was incredibly insightful and visionary regarding the role and work of licensing boards.
Janet M. Banks, MSN, RNC, is an instructor and clinical faculty at the University of Portland, a recipient of the Robert Wood Johnson Foundation Evaluating Innovations in Nursing Education grant. She is working on her Doctor of Nursing Practice degree at Case Western Reserve University, with a focus on nursing clinical education.
It’s no secret that there’s a serious shortage of nursing faculty in the United States. This problem will result in schools of nursing educating too few nurses to meet the growing demand for these health care professionals. One solution to this vexing problem is to increase the number of Dedicated Education Units, or DEUs, to increase faculty capacity.
Chances are good that if you are reading this blog, you know what a DEU is. But, for the sake of being on the same page, it is a collaboration between a nursing unit and an academic institution such as a school of nursing. Often referred to as an academic-service partnership, the school of nursing provides students as well as faculty who are experts in teaching. The nursing unit provides a culture that supports learning, as well as expert nurses to act as teachers.
The students, nurses, and faculty usually work in a ratio of two students to each nurse, with the faculty supporting the nurse as teacher and supporting the student’s professional development.
Michelle Mello, JD, PhD, is a professor of law and public health at the Harvard School of Public Health, and a fellow with the Edmond J. Safra Center for Ethics at Harvard University. She is a recipient of a Robert Wood Johnson Foundation Investigator Award in Health Policy Research.
For years, pharmaceutical companies have been lambasted in the media and government prosecutions for concealing information about the safety and efficacy of their products. In one particularly splashy example, GlaxoSmithKline (GSK) agreed to pay $3 billion in 2012 to settle criminal charges that it failed to report safety data concerning its antidepressant drug, Paxil, and its diabetes drug, Avandia, and engaged in unlawful marketing of these products and one other drug. One mechanism proposed for avoiding such problems is to establish a system through which participant-level data from clinical trials, stripped of identifying information about patients, would be available to the public.
A potential benefit of sharing clinical trial data would be that independent scientists could re-analyze data to verify the accuracy of reports prepared by trial sponsors, which might deter sponsors from mischaracterizing or suppressing findings. Data sharing would also allow analysts both within and outside drug companies to pool data from multiple studies, creating a powerful database for exploring new questions that can’t be addressed within any given trial because the sample is too small to support such analyses.
The potential value of shared data in improving our understanding of the safety and efficacy of drugs, medical devices, and biologics has sparked considerable discussion about how to make data sharing happen. Earlier this year, the European Medicines Agency—the counterpart to the U.S. Food and Drug Administration (FDA) in the European Union—decided to start making data from trials of approved products available in 2014. This begs the question, should the FDA follow suit?
I spent almost a month in Bangladesh producing a story starring Michael C. Hall for the last episode of the Years of Living Dangerously, a documentary series on climate change. In this blog post, I’m going to tell a story that came up in the research phase and one that highlighted, for me, what is possibly the biggest obstacle to getting anything done on this issue.
As someone who’s been studying social movements for a long time, I’ve seen that social change hinges on the tangibility of an issue and sometimes how well you can prove its existence. Yet, most scientists say climate change is invisible, that no one event can be pointed to and called an impact of climate change.
Working on the Years series highlighted this issue all the more since TV and film must show more than it tells. I was in a particularly difficult position trying to tell stories about climate change as a scientist, being bound by this adage that we can’t see it. Yet, when I went to Bangladesh, that adage stopped making sense. It’s not that my scientific mind retreated, but rather that my imagination was able to connect the dots of science in a way it couldn’t without putting science in a specific context, a place where people might already be affected.
Lorenzo Lorenzo-Luaces graduated from the University of Puerto Rico–Rio Piedras, where he studied cross-cultural differences in suicidality. He is currently a graduate student in the University of Pennsylvania clinical psychology PhD program. Lorenzo-Luaces is an alumnus of Project L/EARN, a project of the Robert Wood Johnson Foundation, the Institute for Health, Health Care Policy and Aging Research, and Rutgers University.
The population of groups referred to as “minority” is growing at a faster rate in this country than Caucasians, with estimates suggesting that by 2060, 57 percent of the U.S. population will be non-White. This demographic shift could create a public health concern if racial/ethnic minorities remain underrepresented in mental health research. At present, these populations are less likely to receive mental health care than Whites. When they do receive care, it is usually of lesser quality.
Stereotypes among racial/ethnic minority communities regarding mental health are complex. Research suggests that they tend to have more negative beliefs about mental illnesses than White communities; for example, they are more likely to believe that mental illnesses occur due to factors outside of the individual’s control (e.g., spiritual or environmental reasons). However, despite generally holding more negative views about mental illnesses, research shows that racial/ethnic minorities tend to have less punitive attitudes about the mentally ill. Moreover, they tend to be more accepting about mental health treatments, although they express a clear preference for psychological services over medications.
Differences in access to care, rather than attitudes, likely explain the racial/ethnic gap in service use. Besides the obvious discrepancies in socioeconomic status (SES) between Caucasians and racial/ethnic minorities, the latter’s preference for psychological services may be one barrier to access. This is because, even among the insured, psychological services are more expensive in the short term and harder to access than psychotropic medications. There also are questions as to whether psychological interventions tested largely on White populations are effective for minorities.
Ann H. Cary, PhD, MPH, RN, is dean and professor at the School of Nursing and Health Studies at the University of Missouri-Kansas City. She was a Robert Wood Johnson Foundation (RWJF) Executive Nurse Fellow from 2008 to 2011.
Human Capital Blog: Congratulations on the grant from the Centers for Disease Control and Prevention (CDC) to support the creation of a national resource center for HIV prevention at the School of Nursing and Health Studies at the University of Missouri-Kansas City! What will your role be at the center?
Ann H. Cary: My role is to ensure that the new center has the institutional resources it needs to succeed. This translates into procuring space reallocation and furnishings; supporting personnel hires; consulting with the CDC grant leadership team to remove organizational barriers; assisting in solving any challenges to the center’s rollout; and telling the story about this project through institutional messaging to our community, the discipline of nursing, and to other stakeholders and partners.
HCB: What is your vision for the center?
Cary: That the National HIV Prevention Coordinating Resource Center grant results in a center that leads and coordinates products for providers and the communities they serve to ultimately improve the prevention and treatment of people living with, or at risk of, acquiring HIV.
HCB: The center will be housed at a school of nursing and health studies. Why is that important?
Justin List, MD, MAR, is a Robert Wood Johnson Foundation/VA Clinical Scholar and primary care general internist at the University of Michigan. His research interests include community health worker evaluation, social determinants of health, and improving how health systems address the prevention and management of non-communicable diseases.
Recently, the Robert Wood Johnson Foundation announced a shift from its focus on health care toward building a “culture of health.” As a buzz phrase, “culture of health” carries promise to transform how Americans think about health, but it carries a risk to mean so many things as to dilute its meaning. For example, I saw a recent picture on Twitter where two people anonymously answered “what does the culture of health mean to you?” with “feeling guilty for not taking a sick day.” If we think of the culture of health as a web of health experiences, that answer might be best placed somewhere along an outer ring of the web. But what would be at the center of the phrase’s web of meaning?
To start, a culture of health goes beyond the health care system and incorporates every day experiences and choices people make that affect their health. Building a culture of health means not only looking at clinics and hospitals under the microscope but also looking more closely at how our communities impact health. The culture of health concept offers every person in America a larger vision and momentum for changing how Americans experience health, and it requires everyone’s participation to make change happen.
As a physician, I struggle with what role my colleagues and I play in building a true culture of health. Recent obesity statistics may suggest we’re not so effective. Obesity rates fell for children ages 2 to 5 years old since 2003-2004, according to researchers from the Centers for Disease Control and Prevention. Meanwhile, obesity rates remained essentially unchanged for most other age groups and even higher in women in over 60. From the health system side of the equation, why might that be?
Kelly Andrews Cleaton, MAEd, is a Student Success Advocate (SSA) in eastern North Carolina for Regionally Increasing Baccalaureate Nurses (RIBN), which aims to improve the health and health outcomes of North Carolinians by increasing the educational preparation and diversity of the nursing workforce. RIBN is supported by Partners Investing in Nursing’s Future, a partnership of the Northwest Health Foundation and the Robert Wood Johnson Foundation (RWJF) to support the capacity, involvement, and leadership of local foundations to advance the nursing profession in their own communities, and by Academic Progression in Nursing (APIN), an RWJF-supported initiative to advance state and regional strategies to create a more highly educated nursing workforce.
I began my career as a first grade teacher because I love working with students and watching them grow over time. The next stop in my career was at East Carolina University (ECU), where I worked with students who wanted to become teachers. During my work there, I decided that I really enjoyed watching older students develop into their professions.
Quite by accident one day, I saw an online advertisement for a position as an SSA for RIBN, and it seemed like the perfect fit for me. I absolutely love traveling to high schools in eastern North Carolina and being able to talk to students about the RIBN program. The excited look in their eyes when I tell them there is an affordable way to get their bachelor of science in nursing (BSN) degree is priceless. I enjoy working with five community colleges and putting everything together like the pieces of a puzzle.