Patient Insights Board Members

Anne Marie Mercurio was treated for invasive breast cancer in 2006. Anne Marie was appointed to serve as co-chair of the Patient Advocate Committee at SWOG Cancer Research Network (NCI NCTN) and is an inaugural member of its Digital Engagement Committee. She serves on several advisory boards and executive committees at a various NCI designated cancer centers and a number of non-profit organizations across the country. 

She reviewers grants for NCI cancer centers and has done reviews for research proposals using other funding Mechanisms. She also reviews manuscripts submitted to the BMJ. In addition to be a patient, Anne Marie was the primary caregiver to her mom who was a metastatic breast cancer patient. That experience has helped her identify areas that require attention to address communication gaps that exist for both patients and caregivers to facilitate shared-decision making that focuses on the needs of the patient with the help of their caregiver(s).

Anne Marie’s focus in the advocacy realm is on clinical trials across the entire spectrum. She works with PI’s in labs across the country to help frame research questions, define realistic and inclusive eligibility criteria, and facilitate accrual across diverse patient populations. She is invested in finding ways to incorporate digital tools and wearables into trial protocols to best capture real world evidence. Anne Marie has been working with the Patient Cloud Design Team at Medidata to bring the voice of the patient to the design team. She believes engaging patients early and often will lead to better trial design and quicker accrual.

MarlaJan “MJ” Wexler is a registered nurse, patient, advocate and consultant. MJ was born with a complex congenital heart defect,tetralogy of Fallot, and had four open-heart surgeries by age six. Much of her childhood was spent in the hospital, and she often referred to it as her “second home.” At age 27, MJ was diagnosed with Systemic Lupus Erythematosus (SLE), and over time received overlapping diagnoses of Sjogren’s Syndrome, Behcet’s Disease, and Dermatomyositis. In addition, MJ is a two-time cancer survivor, undergoing treatment for early stage breast and cervical cancer. The members of the PIB call her the “Overachiever.”

MJ has been a registered nurse at The Children’s Hospital of Philadelphia (CHOP) for over 20 years, with 11 years experience working in pediatric cardiology. As a pediatric cardiology patient herself, she knew she could use her experiences to improve care for patients and families going through exactly what she went through. She is the Nurse Coordinator for the Transition Readiness and Awareness for Cardiac Kids (TRACK) program at CHOP, building the program to provide support and education for AYA cardiac patients and families to ensure a smooth transition to adult congenital cardiac care. She tailors her appointments to meet each patient’s specific needs and makes sure no patient gets “lost in transition.”

Her advocacy work started in 2012, when complications from lupus forced her to go on long-term disability. She started the blog Luck Fupus as a means to voice her frustrations of what the disease had taken from her and trying to navigate the healthcare system, with the hope other patients would not feel alone. After winning the WEGO Health Hilarious Health Activist Award in 2014, she was invited to speak at healthcare conferences, life science, and biotech companies to show how patients and industry must work together to improve outcomes for patients. MJ is a two-time Stanford MedicineX, PCORI, and Healthevoices e-Patient Scholar. She’s advocated on Capitol Hill, and has worked with several major pharmaceutical companies on developing clinical trials, and has been a keynote speaker at a number of conferences. She’s been featured on the TODAY Show, ABC News, Philadelphia Magazine, The Philadelphia Inquirer, Advance for Nurses, BuzzFeed, various podcasts and other publications. 

MJ is one of the founding members of the Medidata Patient Insights Board to bring the patient voice to the forefront of clinical trial development.

www.luckfupus.com

marlajan@luckfupus.com

Instagram: @marlajan

Twitter: @marlajan

Phyllisa Deroze is a global diabetes advocate and the Director of Community at dQ&A. Shortly after earning a PhD in English Literature and landing her dream job as a university professor, Phyllisa fell seriously ill. After fainting in her bathtub, she was hospitalized for a week and diagnosed with type 2 diabetes on February 15, 2011. She began blogging about her experience from her hospital bed.

A year later, Phyllisa founded Black Diabetic Info, a website aimed at raising awareness of culturally competent diabetes information, particularly from the African Diaspora. In 2019, she experienced the potentially fatal condition, diabetes ketoacidosis (DKA), again. Phyllisa learned she had been misdiagnosed with type 2 diabetes for eight years. She was finally correctly diagnosed with Latent Autoimmune Diabetes in Adults (LADA), a form of type 1 diabetes.

Phyllisa’s advocacy work has garnered significant attention, with features on the cover of Health Monitor magazine and in Diabetic Living, Diabetes Focus, and other publications. Her passion for diabetes advocacy is reflected in her YouTube vlogs, social media posts, in-person workshops, published essays, and keynote speeches in five countries. She enjoys traveling and writing. Her recent publications include Diabetes Helpers, a children’s book she co-authored with her daughter, The Daily News Blues, a flash fiction story exploring the intersection of COVID-19, mental health, and diabetes, and Laughing to Keep from Dying: Black Americans with Diabetes in Sitcoms and Comedies, a book chapter blending Disability Studies and American humor. For the past four years, she has hosted D-Talk, the podcast for the International Diabetes Federation. She and her daughter jointly wrote Diabetes Helpers, the first children’s book to help adults talk about their diabetes with the children in their lives.

Considered one of the leading voices on the representation of diabetes in African American literature and popular culture, Phyllisa builds community through storytelling. She draws on her PhD in English Literature from Pennsylvania State University, her ten years as a university professor, her experience as a Fulbright Scholar in the United Arab Emirates, and her journey with diabetes. Her motto, “Diagnosed Not Defeated,” serves as an inspiration to others facing similar challenges.

Instagram: @BlackDiabeticInfo     Blog: DiagnosedNotDefeated.com

Dave Bjork is a lung cancer survivor, patient advocate and research evangelist with more than 25 years of progressive experience in community-building, nonprofit fundraising, and research advocacy. Dave is host of the Research Evangelist Podcast where he interviews leaders in lung cancer research and care. In addition, he is an advisor to Medidata Solutions where he serves on the Patient Insights Board team to bring the patient voice to the clinical trial experience. Previously Dave spent 8 years leading nonprofit fundraising and advocacy teams.

Dave has made it his life mission to connect patients, biopharma companies, academic institutions, and other key influencersto forge strong partnerships to focus on cancer research and care. A frequent keynote speaker and moderator, he also proudly serves on the Advisory Board of the Cancer Epigenetics Institute at Fox Chase Cancer Center.

Dave earned a BS in Economics and Finance from the Wharton School at the University of Pennsylvania.

Jacob “JJ” Singleton was diagnosed with colorectal cancer in 2015 at just 27 years old.

Not long after completing initial treatment, his cancer metastasized and he has since been in lifelong treatment for an incurable disease. As an advocate, JJ is on the national survivor board of the Colon Cancer Coalition and is a board member at Stupid Cancer. He serves as a patient advocate for the SWOG Cancer Research Network and has been a national ambassador for Fight Colorectal Cancer. He has also advocated on Capitol Hill on behalf of the colorectal cancer community.

JJ’s advocacy includes working with the National Cancer Institute and the American Cancer Society, and he is frequently invited to share his patient experience with pharmaceutical companies. JJ credits a clinical trial with saving his life. He brings a powerful perspective on the unique challenges faced by young adults with cancer and the added challenges of living in a rural area. JJ often speaks openly about the physical and emotional impact of ongoing treatment.

Jamie Troil Goldfarb is alive today because a phase I clinical trial for metastatic melanoma saved her life. When her diagnosing oncologist told her he would do everything within his power to “buy her six more months” with her then newborn, she knew that joining a clinical trial represented her best chance for survival. A passionate advocate for clinical trials, Jamie works through numerous advocacy groups including the Melanoma Research Foundation and the Melanoma Research Alliance (for which Jamie serves as a moderator for their online patient forum); regularly speaks at industry conference about the importance of getting clinical trial information directly into the hands of the patients who so desperately need it; is a Research Advocate for the National Cancer Institute; serves on the grant review board for the Congressionally Directed Medical Research Program; and works one-on-one with people with cancer to help them understand and navigate their treatment options.

Outside of her advocacy initiatives, Jamie is the Director of Trial Strategy for a global patient recruitment company and has been working in public health communications for more than 20 years – 12 of which have focused on clinical trial patient recruitment. Through her work in the industry and her personal experience as a clinical trial participant and cancer survivor, Jamie brings unique perspective around the needs of patients, sites, CROs, and sponsors.

Launched by Medidata in 2022 with a posthumous award to Linnea, Jamie is the first recipient of the Linnea Olson Advocate of the Year award in 2023.

Mel Mann, MBA, M.Ed, was diagnosed in 1995 with chronic myeloid leukemia (CML), while serving as a Major in the army. He was given only three years to live unless a bone marrow donor could be found. Mel conducted numerous bone marrow drives and recruited many thousands of potential donors onto the marrow donor registry; however, Mel was unable to find a lifesaving donor.

In 1998, Mel entered phase 1 of the Gleevec Clinical Trial. Gleevec, is the world’s first targeted cancer drug. It has helped save over a million lives and it treats 11 different types of cancer. Mel is the world’s longest living Gleevec survivor.

Mel has written many articles about his experience, appeared on numerous television and radio shows, panels, and patient advocate committees. He advocates for improved patient policies, patient access, and clinical trials.

Mel resides in Atlanta Georgia with his wife Cecelia. They have one daughter, Patrice Mann, MD, MPH.

Jamie Tyrone is an author, Registered Nurse and retired hospital marketing executive. Only two percent of the population has her ApoE 4/4 genetic status that puts her at one of the highest genetic risks for succumbing to Alzheimer’s disease. Motivated by her strong family history of AD, she became a research participant, is the chairperson for the Stakeholder Committee for the Advisory Group on Risk Education for Dementia (AGREEED – originally convened by the NIA/NIH), and a dedicated advocate for the specific needs of those with her genetic status to increase funding and research participation as a board member of the ApoE4 Alzheimer’s Alliance. 

Jamie envisions a world without this cruel disease that destroys memories and often shatters families. She is a founding member of Women Against Alzheimer’s and has been honored with a place on Maria Shriver’s “Big Wall of Empowerment” recognizing those who are architects of change. She was honored to be a member of the advisory committee on the “Return of Individual Results” with the Multi-Regional Center for Clinical Trials with (MRCT) with Brigham and Harvard by defining and creating ethical, actionable, and practical solutions for global clinical trials. She has co-authored several published papers on returning individual results to research participants and implementing the use of blood-based biomarkers in the primary care setting with the CEOi initiative. 

Jamie’s family history with Alzheimer’s disease is documented in the CNN award-winning film Filling the Blank, produced by Filipe Barrel. Her story was also highlighted in the BBC documentary Curing Alzheimer’s. Her personal experience of living with this genetic status has been a feature story in the New York Times, a cover story in the Washington Post, featured in the daily newspaper San Diego Union Tribune, and included in a PBS Newshour segment discussing how Alzheimer’s disease researchers seek better prevention with early detection. Her book Fighting For My Life—How to Thrive in the Shadow of Alzheimer’s was released by HarperCollins May 7th, 2019.

Linnea Olson was a founding member of what would become Medidata’s Patient Insights Board. Linnea lived with lung cancer for nearly 17 years prior to her death in November of 2021. She blazed a trail by participating in SIX phase I clinical trials, the first one in 2008 when there were no further traditional treatment options available. This came at a time when lung cancer research was at a tipping point and her doctors identified that Linnea had an ALK mutation for which they were testing new treatments. As she said, “… when you’re chased by a bear to the edge of a cliff, you jump.” Linnea jumped. Six Times. Her participation in each trial added to new, approved lines of novel therapeutics. Linnea’s ability to eloquently and generously share her experiences and to push back when something seemingly didn’t best serve the needs of patients was unparalleled. To honor her extraordinary life and to ensure her legacy lives on, Medidata established the Linnea Olson Award for Patient Advocacy in 2022 which was awarded to Linnea posthumously, as the inaugural recipient. 

In her own words, her TEDx talk from November 2019:

Patient, parent, person, research subject | Linnea Olson | TEDxBeaconStreet

Here are just a few of the many tributes and expressions of appreciation:

Harvard Medical School

Linnea Olson: An Appreciation of a Giant

ALK+

Sheila Marie Johnson began working with Medidata in November of 2020 months before the patient advocate consultants would be formalized as the Patient Insights Board. Sheila served in the US Air Force for decades before a diagnosis of metastatic breast cancer forced her into retirement. She was in treatment for fourteen years before her death in April of 2024. Sheila was especially passionate about making sure minority and underrepresented communities understood the importance of their participation in research. Sheila approached every interaction with kindness and joy. Despite her many accomplishments, she was filled with humility and she always expressed genuine amazement that her advocacy work was of such enormous impact. Sheila enrolled in an early phase trial for the drug, Enhertu which quickly changed the trajectory of treatments for people with HER2+ breast cancer. Her book, A Survivor’s Lens was adapted for the BET+ movie, God’s Grace: The Sheila Johnson Story. Always quick to offer assistance, to share her story, or do anything that would be helpful, Sheila’s legacy, in her own words will live on, “Sheila tried. Sheila cared. And Sheila did everything she could to end breast cancer once and FOR ALL.” 

In October of 2023, just six months before her death, the movie was released and she was featured on the local news:

Black woman fighting decade-long battle with breast cancer advocates for others with the disease