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In health,
Griffin P. Rodgers, M.D., M.A.C.P.
Director, National Institute of Diabetes and Digestive and Kidney Diseases
Patients bring critical input to NIDDK research
Kidney studies benefit from community involvement
By Lisa Yuan
Patient inclusion is essential to clinical research. While patients are often involved as study participants, less often do they help guide and shape the research process. But the patient-scientist collaborations at the core of two NIDDK-funded projects in kidney disease are proving that patients have a lot to bring to the table, when given the opportunity.
“We need patients to know that they are taken seriously, not just as a source of data but also as partners in clinical research, with essential views and expertise,” said Dr. Paul Kimmel, program director at NIDDK’s Division of Kidney, Urologic, and Hematologic Diseases (KUH).
Kimmel helps oversee the APOL1 Long-Term Kidney Transplantation Outcomes Network (APOLLO), which aims to improve the lives of kidney donors and transplant recipients by learning more about APOL1 gene variants. These variants are found in some people of African descent and are associated with an increased risk of kidney disease. The study will test black kidney donors and recipients for APOL1 gene variants, then observe how these variants affect kidney transplant outcomes.
“APOLLO study participants will be primarily of African origin. Yet, the study researchers are almost exclusively white,’ said Kimmel. “We recognized the importance of building a study leadership team that includes people whose life experiences align with those of participants.”
The study team enlisted a 26-member Community Advisory Council (CAC), composed entirely of African Americans who have either donated, received, or are waiting to receive a kidney – and their family members.
At the first APOLLO steering committee meeting, CAC members sat together with the core researchers to share recommendations. The council has provided critical input on the study’s mission statement, research design, ethical considerations, and more. For example, they helped re-write informed consent materials into language that patients could easily comprehend.
“We hammered out the protocol for the whole study, getting advice in real time from the Community Advisory Council,” said the study’s lead investigator, Dr. Barry Freedman of Wake Forest University. “Nothing happened without their blessing.”
Nichole Jefferson, a kidney transplant recipient who co-chairs the CAC, is pleased that the researchers are actively listening to and learning from the patient group.
“I’m exhilarated each time I hear them say ‘You have a seat at the table,’” said Jefferson. “While patients may not always be at the same academic level as their clinicians, we want our feelings and experiences to be considered.”
Many African Americans distrust medical research because of a history of abuse inflicted by researchers and clinicians. In one of the most well-known examples, the Tuskegee Syphilis Study conducted from 1932 to 1972, scientists deliberately withheld treatment from black men with syphilis in order to see how the disease progressed when left untreated. In another example, in 1951, doctors took cell samples from an African American woman named Henrietta Lacks without her consent. Lacks’ unique cells, called HeLa cells, went on to launch many groundbreaking scientific discoveries and continue to advance research today. Yet her family knew nothing about her extraordinary cells – or the profit made from them – for decades.
“I look at current generations who are still emotionally scarred from the inhumane experiments practiced on people of color,” said Jefferson. “Many still have Tuskegee and other horrendous experiments in the forefront of their minds.”
Jefferson also serves on the Community Engagement Working Group, comprised mostly of patients, for the KUH-led Kidney Precision Medicine Project (KPMP). The study focuses on finding new ways to treat kidney disease by analyzing kidney biopsies to identify critical cells and molecular pathways involved in the development of chronic kidney disease and acute kidney injury.
The working group has advised on study design, ethics, and data analysis, and its members have led activities related to informed consent, community outreach, and recruitment. As equal partners in leadership and oversight, the group members bring firsthand expertise – based on their personal experience of kidney disease – to all facets of the KPMP.
“Incorporating the patient perspective has been absolutely critical. Because KPMP involves collecting tissue biopsies for research purposes, we wanted to put ethics and patient safety first – while maintaining our focus on improving care for future generations,” said Dr. Robert Star, KUH director.
“At NIH, the people we serve are at the center of what we do,” said NIDDK Director Dr. Griffin P. Rodgers. “The APOLLO study and Kidney Precision Medicine Project are guiding examples of how patient engagement in research is an investment not just in the communities we serve, but also an investment in public health.”
The APOLLO study is a collaboration with the NIH’s National Institute on Minority Health and Health Disparities and National Institute of Allergy and Infectious Diseases.
NIDDK shares holiday joy in the NIH Clinical Center
Members of NIDDK’s Office of Communications and Public Liaison and Office of Scientific Program and Policy Analysis used their creativity and teamwork skills to participate in the 16th annual NIH gingerbread house decorating contest. Their first-place entry, a festive holiday llama, received the most votes cast at the Clinical Center’s paper ballot box. The playfully competitive activity brought nearly 100 masterful creations to the Clinical Center Atrium and boundless cheer to patients, families, staff and other visitors during the holiday season.
Special Announcement
NIDDK celebrates its 70th anniversary this year, and our Fall issue of the Director’s Update will be dedicated to highlighting the scientific achievements from NIDDK-supported research and NIDDK investigators over the last seven decades. Look out for more news on the NIDDK website and social media– Twitter, Facebook, and our new Instagram account!
NIDDK director blogs about institute’s efforts to increase diversity in biomedical research
Last December, NIDDK Director Dr. Griffin Rodgers contributed a guest post to NIMHD Insights, a blog published by the National Institute on Minority Health and Health Disparities. Dr. Rodgers’ blog post, Talent in Biomedical Research is Universal; Opportunity is Not, highlights NIDDK’s training and networking programs aimed to build and sustain a diverse pipeline of talented researchers. Several of these programs are offered through the NIDDK Office of Minority Health Research Coordination and encourage high school and college students from under-represented groups to pursue careers in biomedical science.
The post is part of an NIMHD Insights guest blog series featuring Institute and Center directors across the NIH who share their institute’s endeavors related to minority health and health disparities research.
Partnering and sharing information "In the Community"
As part of National Kidney Month in March, NIDDK Director Dr. Griffin P. Rodgers and members of the Chi Eta Phi Nursing Sorority participated in a local NBC segment, "In the Community," with reporter Molette Green to promote kidney health. Chi Eta Phi members offered blood pressure screenings for community attendees, while Rodgers explained the link between high blood pressure and kidney disease, and encouraged viewers to take steps to manage high blood pressure and protect their kidneys.
NIDDK publishes annual report
The NIDDK's Recent Advances and Emerging Opportunities annual report for 2020 is now available. This publication—now in its 20th year—highlights examples of NIDDK-supported research advances and activities from the last year.
NIDDK’s Office of Scientific Program and Policy Analysis leads the production of this report with input from the Institute’s extramural divisions and offices, and the Division of Intramural Research.
The report highlights examples of NIDDK-funded research advances published in 2019 as well as personal accounts from patients and other individuals involved in NIDDK-funded research, stories of discovery that trace research progress in specific areas over time, and notable scientific presentations and workshops.
The report concludes with a selection of data on funding trends that illustrate the NIDDK’s commitment to its guiding principles, including a link to the full set of funding trend data available online.
PuppyCam delights viewers and shares important health messages
NIDDK Director Dr. Griffin P. Rodgers gave the opening remarks at the annual NIH PuppyCam event, which streams live on social media as a vehicle to share messages about reducing stress and improving other health conditions. These service dogs-in-training from Hero Dogs not only support the Children’s Inn at NIH, but also will become companions for veterans and other first-responders.
NIDDK leads the way in workplace satisfaction and more
The 2019 Federal Employee Viewpoint Survey (FEVS) results are in, and once again, NIDDK’s scores were overwhelmingly positive across nearly all measures. For the second year in a row, NIDDK ranked No. 1 among all large institutes at NIH in both Employee Engagement and Global Satisfaction. “Seeing these results is exciting,” said NIDDK Director, Dr. Griffin P. Rodgers. “The dedication and commitment I witness day in and day out across the institute is what makes NIDDK such a great place to work.”
NIDDK continues to strive for improvement and to create and sustain an environment where staff can flourish. “Our goal is an institute that is inclusive, diverse and respectful of all,” said NIDDK Executive Officer Camille Hoover. “It’s in this spirit that NIDDK launched a robust anti-harassment program that NIH has deemed a model program for other components within NIH."
Learn more about NIDDK’s anti-harassment program in an upcoming issue of the Director’s Update.
Getting to Know: Dr. Susan Mendley
Susan Mendley, M.D., joined NIDDK’s Division of Kidney, Urologic, and Hematologic Diseases as a program director in 2017. She sat down with Alyssa Voss to talk about her career and what she hopes lies ahead in the field of pediatric nephrology.
What led you to become a pediatric nephrologist?
When I was in medical school, I had an exceptional mentor, Dr. Leah Lowenstein, who was a nephrologist. As a student, she introduced me to the field in her unique, personal way. She showed me how nephrology, which already fascinated me, reached from physiology into immunology and pathology. But Dr. Lowenstein’s style of mentorship also had a profound effect on my choice. She was extremely welcoming and engaging and supportive of all her mentees. When you spoke to her, she focused her attention and made you feel that you were the most important person in the room, and she made everyone feel like they were an integral part of the team.
Later while training at the University of Chicago in my nephrology fellowship, I began working in pediatric nephrology, a practice that is challenging, but also extremely gratifying.
What brought you to NIH?
I’d learned of an opportunity at NIDDK to be a program director overseeing the pediatric nephrology research program. I was at a stage in my career where I had accomplished much of what I intended – I was a division chief and developed a successful clinical and research program in pediatric nephrology at the University of Maryland. I was ready to take a different turn in my professional journey by overseeing and guiding a research portfolio that allowed me a broader mission and the chance to make an impact on a larger scale.
What is something you most enjoy about your job?
Right now I am working on a couple of multicenter clinical studies in the planning phase. There are many young PIs that I work with, and I am thankful that I can draw from my experience with Dr. Lowenstein and be that mentor that young physician-researchers need. They want to grow and be part of the research community. While there is no easy path to research success, I want everyone I work with to feel like they belong. That is how I view inclusivity. We don’t realize how many people are lost to medicine and research because they did not feel heard or valued.
What would you like to see happen in your field over the next 10 years?
I’d like to see the field grow and nurture a robust network of researchers who can ask new and innovative questions about pediatric kidney disease, because those questions are very different than the ones driving adult kidney disease research.
This field has a lot of clinical demands, and the burden of care on patients, families, caretakers, and clinicians is heavy. Much more progress is needed and pediatric kidney disease is a rare disease, so there are unique challenges in conducting research, such as the relatively small number of patients for clinical trials. I’d like to see the next generation of physician-researchers tackle these challenges by coming up with novel approaches to research in this population.
What are your interests outside NIH?
I recently resumed playing tennis. I’d given it up for many years, but since moving to NIH, I’ve been able to take it up again and I’m so happy about that. I’m a little rusty, but getting better!
Institute strategic planning underway
This year, NIDDK is undertaking the development of an institute-wide strategic plan. The plan, aimed to be completed in 2021, will illuminate a broad vision for accelerating research into the causes, treatment, and prevention of diseases and conditions under the Institute’s mission. The result will be an overarching, 5-year trans-NIDDK Strategic Plan that will complement NIDDK’s disease-specific planning efforts.
Planning efforts will involve a Working Group of Council comprised of a subset of the members of NIDDK’s Advisory Council and others with expertise in NIDDK’s mission areas, along with NIDDK staff. Importantly, the strategic planning process also will include opportunities for broad public input to inform the development of the Plan.
Be sure to check the NIDDK Strategic Plan website for updates.