Patient stakeholder, PCORI-funded research study

Kyle Smith and Isaac Williams (below) are patient stakeholders for a PCORI-funded research study that focuses on improving the transition from pediatric to adult care for young adults with sickle cell disease (SCD). In this study, the research team is comparing ways to help young adults with SCD manage their condition and begin to use adult healthcare services.

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Being a patient stakeholder enables me to provide a voice for young adults with SCD and to help ensure that the patient is considered in all aspects of the research. This is a responsibility that I take very seriously.

The transition to adult care is a critical juncture for young people with SCD, and continuity in care is especially important during this vulnerable time. One of my contributions to the study has been to help develop and test a mobile health application that can support young adults with SCD in managing their own care and their health. I was able to help refine the app to better meet the needs of patients based on my own experience living with the disease.

I was diagnosed with SCD at 3 weeks old, and I experienced multiple complications and hospitalizations in my childhood. The health care professionals that provided me with care over the years became like my extended family. It was tough for me to transition away from pediatric care, as I had a strong emotional attachment to my care team.

My doctors started preparing me for the transition early and got me thinking about how I would take care of myself and successfully manage my SCD as I got older. I switched to adult care after graduating college, so I already had a sense of independence in taking care of myself. I feel fortunate that my personal experience was relatively smooth. Unfortunately, this was not the case for many of my peers who had less social support or more complicated medical histories.

Helping others with SCD has motivated me to do this work. I feel that I can advocate for others who may not be able to advocate for themselves, and help make their transition process easier.

Individuals with SCD are a population that has been underserved for too long. I think it’s exciting that there is great work going on now to improve the lives of people with SCD, and PCORI’s investment in studies like this is a testament to that. I am proud to be part of this initiative.

Patient stakeholder, PCORI-funded research study

Isaac Williams and Kyle Smith (above) are patient stakeholders for a PCORI-funded research study that focuses on improving the transition from pediatric to adult care for young adults with sickle cell disease (SCD). In this study, the research team is comparing ways to help young adults with SCD manage their condition and begin to use adult healthcare services.

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Like many young adults with SCD, I grew up with my childhood doctor. The same staff have seen me through the good and the bad, and they know me very well. I recently transitioned to adult care, and I am keeping in touch with the pediatric medical staff, who have been family to me.

Being a patient partner on this study has been rewarding in ways I did not expect. Not only has it given me the chance to make an impact, but it has been an opportunity for personal healing as well.

Participating in interviews about my experience living with SCD led me to assess my own journey with the disease, to relive my experiences, and to reflect upon the lessons I have learned from them. It made me pause and think about how much I have been through, and I realized that it has shaped who I am today. The process of sharing my experience with the study team has been therapeutic in and of itself.

One of the most eye opening aspects of being part of the research study has come from working on developing the mobile application that is being tested. The app offers patients the ability to track their pain and their mood, and it shows patterns of how they are related over time. I didn’t think about it much while I was going through it, but I realize now how connected my mental health is to my physical health.

All the episodes of pain and the hospitalizations were like checkpoints in my life. Overcoming these challenges has helped build my character. I’ve learned that though the journey may be hard, if you make it through the tough parts, everything works out in the end. You just have to have faith. If I can have an impact on even a few people’s lives, I’m doing my service with the talent God gave me.

Advisory Committee Member and Community Faculty, Charles R. Drew University of Medicine and Science

Juanita Booker-Vaughns is an advisory committee member for a PCORI-funded research study on palliative care delivery. She brings multiple perspectives to the research team from her experience as a caregiver, educator, and community liaison. She is passionate about community-based participatory research and is a Community faculty member at the Charles R. Drew University of Medicine and Science in Los Angeles.

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I serve on the advisory committee for a PCORI-funded study about palliative care, which focuses on easing suffering and improving quality of life for patients with a serious illness. Led by Corita Grudzen, MD, MS at the New York University School of Medicine, the study compares two ways to provide palliative care to older adults: by providing phone-based support from a nurse case manager or in-person help at a clinic that specializes in palliative care.

The advisory committee holds regular conference calls with the study team and convenes in person annually, bringing together members from five states. Our role is to bring the patient and community perspective to the project and to help refine the study so it can best meet the needs of patients and caregivers. For example, I was able to help improve the content and readability of written materials for study participants, many of whom are elderly, and help refine the interview protocol by listening to patient phone interviews conducted by nurses.

I have learned just how important it is to be a bridge between the research community and the patient community. When I first started working on the project, I realized that many community members were not familiar with the term “palliative care”. I was able to work with the research team and community members to find ways to communicate the value of the study and the reasons why it is important for community members to participate.

I am part of a team of Community faculty at the Charles R. Drew University of Medicine and Science in South Los Angeles. We serve as a bridge between the academic world and the local community, which is an under-resourced population with poor health outcomes. We are involved in many community-based participatory research projects with academic and private partners, and sit on various national boards. It is through this work that I met the study’s Principal Investigator.  

I have also brought my personal experience with palliative care issues to this work. Two individuals who were close to me had advanced-stage cancer and I learned a great deal about pain management options and integrative medicine through this experience. I was able to share these insights with the study team and help them make the focus of the study more patient-centered.

Patient and Caregiver Stakeholder, PCORI Research Partner

Dawn Rosini brings multiple perspectives (patient, family member, caregiver) to a PCORI-funded research study at the University of Florida as an active member of the project team. She also serves as a permanent member of the Patient Advisory Council and Wayfinding Board at University of Florida Shands Hospital.

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In 2014, my mother and I became research partners in a PCORI-funded study, and the experience changed our lives. Led by Dr. Donna Carden at the University of Florida, the study looks at the effects of providing community-based support to chronically ill older patients after visiting the emergency department (ED).

My mother suffered from coronary artery disease, congestive heart failure, chronic obstructive pulmonary disease, end-stage renal failure, and diabetes. She was in and out of the hospital every few months over the last several years of her life. On multiple occasions, we experienced difficult transitions from the hospital to home.

It was from our combined experience with the healthcare system, both from her perspective as a patient and mine as her caregiver, that we gained an understanding of the dire need to improve care transitions. When we were approached about participating as patient partners in a research study to improve transitional care, I knew it was the right thing to do. I felt very strongly about the importance of sharing our experiences and perspectives in order to be part of a solution.

Before this opportunity came along, my mother had almost lost her sense of self-worth and value. Being a member of the project team helped her regain her sense of purpose. It meant the world to her that the research team truly valued her opinions and cared about her, and that she could contribute to help improve health care.

PCORI is funding research that is very different from the traditional approach, with its commitment to engaging patients and families in every step of the research process. This is especially important in research to improve transitional care, because poor care transitions affect everyone, including medical professionals, and can cause further medical issues, medication errors, stress, and lapses in care. No one group understands all the obstacles or has all the answers. We must work together to come up with solutions to solve these complex problems, if we are going to change the way patients experience healthcare transitions.

Getting involved with research as a patient partner has changed my life. To be part of something bigger that can lead to positive change, and to know that my contribution will have an impact that carries on, has been a powerful experience. Most people don’t get that opportunity, and I am truly grateful.

Patient Co-Investigator, Trauma Survivor, Attorney

Peter Thomas is a patient co-investigator in a PCORI-funded research study. He brings multiple perspectives to the research team as a trauma survivor, patient advocate, and attorney specializing in healthcare policy, including disability and rehabilitation. He serves as Chair of the Trauma Survivors Network Committee for the American Trauma Society.

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I am a patient co-investigator for a PCORI-funded study that examines patient-centeredness in trauma care. Led by Douglas Zatzick, MD, at the University of Washington, the study aims to determine whether better care coordination and increased attention to patient concerns can improve outcomes of importance to patients, their caregivers, clinicians, and policy makers. 

When I was 10, I was involved in a car accident and lost my legs below the knees. I also lost my brother in the same accident, so it was quite a traumatic experience. During my stay in the ICU, a man came to see me. In one smooth movement, he jumped out of the artificial legs he had been wearing and landed on the bed next to me. He showed me that my life was not over. That was a pivotal moment for me and led me to develop a passion for patient centeredness, and particularly peer support, in trauma care.

Patient co-investigators have the opportunity to make a real impact. We have actively participated in designing the research program, and helped make adjustments to enhance the study along the way. For example, midway through the research project, we suggested that what patients might really need is to talk with a peer—someone who has been through the same accident or injury. The principal investigator paid real attention to what we had to say, and together with the rest of the team, incorporated a peer support model into the study. The project headed in a direction it never would have gone had the patient perspective not been fully absorbed into the research design, and I believe this addition will enhance the impact of the program.

I see patient involvement in research spreading as more people are recognizing the value of incorporating the end-user perspective across all phases of studies. Researchers across the country are looking at results from PCORI-funded projects, and are adopting the concept of patient centeredness and patient involvement in their research voluntarily, even when it is not mandated. I believe this improves the quality of research.

There is a saying in disability policy circles—a moniker of civil rights for the disability community over the last few decades—"Nothing about us, without us". This saying is very applicable to the work that PCORI does. If you engage patients upfront and throughout the research process, you are bound to produce research that is more relevant to patients.