Stakeholders In Health Care: A Case Study

In 2014, my grandfather was diagnosed with Alzheimer’s. At the time, I didn’t realize how much of an impact that diagnosis would have on me. Shortly after I graduated from college, my family moved him to the United States to live with us, and I became his caregiver. It was difficult to watch a man who was once so active, frustrated to have his body and mind betray him. Without the help of temporary relief from respite services and family support, I would have likely given into the “caregiver burden”. While navigating the healthcare system, I had unknowing become his voice because he could not speak for himself. It was this experience helped me to see caregivers an access to care intervention, and led to my interest in aging-related policy. Through the experiences that followed, I began to see caregivers as stakeholders in the healthcare, which led to my

interest in stakeholder engagement in the policy process.
While acting as my grandfather’s caregiver, I was able to draw on some of the courses I took for my human development concentration to understand some of what he was going through. However, it was the resources provided by AARP that helped me the most. The relief I felt from using their resources inspired me to apply for a fellowship with their state health and family team. I arrived just in time to participate in their I Heart Caregivers campaign and their efforts to improve access to care for older adults. While I was their this team worked on a portfolio of state level legislation meant to not only increase access to care through interventions like Medicaid expansion, nurse scope of practice, LTSS, nurse authority, telehealth and telemedicine, but also improve resources for family caregivers such as Caregiver Advise, Record, Enable (CARE) Act, respite care, tax credits for caregiver, and family leave. I worked most closely with the CARE Act, which requires designation of a family caregiver upon admission to a hospital, notification of the caregiver before discharge, and instruction on post-discharge medical tasks for the caregiver to perform at home. I tracked the introduction and passage of the CARE Act, and variations in the legislation across states. I also assisted in analyzing which bills were closest to or improved upon the model legislation drafted by AARP.
I built upon topics I learned about from AARP in several papers I wrote during my masters. I wrote about the CARE Act in my policy process course, analyzing the successful passage for the legislation in some states and failures in others by examining them through the Advocacy Coalition Framework. For the project, I was able to interview members of the State Health and Family Team about the legislation’s progress, and influential actors in the coalitions. I presented this paper to the Regional Student Conference for Association for Public Policy Analysis and Management, and came away with several ways to expand this research topic, and further research questions such as how the CARE Act impacts hospital readmission rates in the states that implemented the legislation.
My work with AARP also influenced me to write a paper on respite care. The paper was inspired by a 2015 report by AARP, “Valuing the Invaluable”, and my own personal experience with using respite services. The Public Purpose Journal published it in their 2016 Edition.
After getting consent from AARP, I was also able to work with AARP’s Public Policy Institute on increasing LTSS preparation for my Policy Practicum. As “project manager”, I lead our team in creating a toolkit of “innovative” interventions to increase preparation for future LTSS needs, and in collaborating with our client Dr. Jean Accius. My focus through this project was using behavioral and social science theories, particularly from psychology and human development, to help frame elements of the framework, and encourage the use of “nudges” and “small wins”. Heuristics played a major role in the development.
After graduation, I began working for Patient-Centered Outcomes Research Institute (PCORI) on their stakeholder engagement team.

I was drawn to the organization because they framed caregivers in a way I had not heard before, as “stakeholders” in the healthcare system. PCORI, who was authorized by Congress through the Affordable Care Act, funds patient-centered outcomes research, which addresses the questions and concerns that are most relevant to patients. In my role as Program Associate for Stakeholder Engagement, I evaluate all of the Engagement Department’s activities, conduct environmental research on healthcare stakeholder communities, and find gaps in our interactions with stakeholders. My most recent responsibility involves managing elements of the recruitment process for our Advisory Panels, which aims to bring together voices from stakeholder communities to advise staff and our Board of Governors on engagement efforts and relevant research questions. This opportunity to improve our selection process reminded me of diversity’s importance in the decision-making process and, subsequently, the policy

process.
My interest in diversity and decision-making first merged during my experience as a Peer Dialogue Leader for the Common Ground Multicultural Dialogue Program (Common Ground). I learned to lead these dialogues though courses such as Adaptive Strategies for Multicultural Leadership and Dialogue, and Experimental Learning. Each dialogue group consisted of a diverse group of students that met to discuss multicultural topics, and come to a consensus on addressing a complicated issue. Each session focused on a different element of the problem, including dimensions of the issue, options for action, consensus, and consequences of the actions. The diverse perspectives often led to creative solutions, and a more comprehensive understanding of the intended and unintended consequences.
My knowledge from this program helps me to clearly see how the multicultural perspectives of patients, and the diverse values of various stakeholders conflict with or complement each other, leading to policy options that otherwise would not have come to fruition. Like the participants of Common Ground, actors in the policy process contribute different dimensions of the problem, offer policy alternatives, and evaluate the consequences. I am particularly interested in the consensus part of this analogy, especially as it relates to healthcare. How are stakeholder groups such as patients, clinicians, payers, purchasers, etc. currently engaging in policy? Is it through civic participation, advocacy, public-private partnerships, or coalitions? When are these groups typically engaged? In agenda setting, formation, or implementation? Which forms of engagement are successful, and why?
American University provides a unique opportunity to explore my research interests while developing my skills in a culture of support from the faculty to students, with which I am familiar. Throughout my time at AU, I have had plenty of opportunities to interact with faculty in academic, extracurricular and professional settings. While working with the Public Purpose Journal (PPJ), I interacted with several professors to assemble the print journal’s faculty review board. This board worked parallel to our student reviewers for the peer review process to evaluate submissions. To assessable a representative board that included professors from each department in the School of Public Affairs, I collaborated with Dean Vicky Wilkins and departmental chairs to gain recommendations, and spoke with professors with diverse areas of expertise. Each person I spoke with welcomed my inquiries, and truly seemed to care about the efforts the PPJ were putting forward.
I had similar experiences putting together “Wonk Talks” for the Graduate Student Council in my time as the Academic Chair, and speaking with faculty about American’s PhD program and my interest in pursuing a career in academia. I have seen how eager the faculty at AU are to help students learn and stay engaged within the department. I am optimistic that American’s PhD program will offer me the support I am looking for from a PhD program. This support seems particularly appealing given the pool of professors with diverse research interests who can act as resources as I pursue research in these areas and discover new research interests.
Besides the many professors with various health policy expertise, I see value in working with some of the many professors with specific research interests that tie in uniquely with mine. For example, Drs. Scott Bass and Alison Jacknowitz hold expertise in aging and the elderly, and could be useful resource in exploring that interest. Dr. Anna Amirkhanyan’s research interests in public private partnerships, collaboration and decision-making, and experience researching civic participation, tie in nicely with my interest in stakeholder engagement in policy process. Additionally, her experience researching nursing homes could be utilized with my interest in aging policy. Dr. Sonja Walti’s expertise in the policy process and multilevel governance would be useful as I explore stakeholder engagement in the various stages of policy, and in various levels of government. Dr. Laura Langbein’s expertise in program evaluation would help analyze the success of various types of engagement, framed as interventions. Her research interest in theories of influence of interest groups in congress and the bureaucracy connects well with my interest in stakeholder engagement, as well.
American’s option of studying both Administration and Policy provides me the flexibility to fully explore the policy process from the agenda setting stage through the implementation stage. I’ve learned through my work with AARP and my experience through the Center for Congressional and Presidential Studies’ Public Affairs and Advocacy Institute that stakeholder engagement does not end when a policy is adopted. Their engagement continues through the implementation and evaluation stages. AU’s program will allow me to continue to monitor engagement and influence from stakeholders through the entire life of a policy.
Undergraduate student, I worked with the Anthropology of the Immigrant Life Course Program, and learned essential skills in qualitative analysis, such as interviewing, case studies, and participant-observation. I transcribed, coded and analyzed interviews that I helped conduct. These efforts contributed to the publication of Contemporary Conversations on Immigration in the United States: The View from Prince George's County, Maryland by the program’s director, Dr. Judith Freidenberg.
Combing these analyses and my human development concentration led to my honors thesis, “Cultural Perceptions of the Maryland DREAM Act in Prince George’s County,” in which I drew on the concept of enculturation, and theories from human development to identify social factors and dimensions of identity that influenced perceptions of the Maryland DREAM Act on residents of Prince George’s county. Dr. Freidenberg acted as my advisor and committee chair in this honors program. Through this program I assembled a committee, defended a thesis proposal, conducted interviews and archival analysis, and defended my thesis. I presented preliminary results to the Society for Applied Anthropology, “Enculturation of Perceptions of the DREAM Act”.
This experience is still fresh in my mind, along with the experiences I had while getting my master’s. I still have positive relationships with faculty that I would love to continuing working with. I’ve recently experienced the pressures of working full-time and going to school full-time. These research topics directly relate to my most recent work experiences. I believe that capitalizing on the recency of all these experiences would allow me to successfully transition the knowledge and skills that I’ve gained, and give me a commitment to aging and stakeholder voices, not yet tainted by life.