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Vol. LXVII, No. 14
July 3, 2015
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‘Faces of Clinical Research’ Speak at Women’s Health Week Event

On the front page...

Dr. Janine Clayton applauds ORWH’s 25th anniversary.

Dr. Janine Clayton applauds ORWH’s 25th anniversary.

Juliana was tired of spending so much time in the hospital. Sickle cell anemia was increasingly taking over her life. Two different sources suggested the same NIH research study in the same week. It must be a sign, she thought.

Jamie and her family were keeping a very big secret. Every so often, the 10-year-old disappeared from her small town life and went away for medical treatments. What she told people was partly true: she had a heart condition. She didn’t tell them the whole of it: She had contracted HIV through a blood transfusion during surgery and was in a research study at NIH.

Continued...

Lauren came to NIH on a fellowship in allergy and immunology. Trained in both pediatrics and internal medicine, she decided to pursue a stint in clinical research training. It was supposed to last only a few years. Assigned to a lab studying HIV, she also treated children and teens with AIDS and cancer, investigating ways to stimulate the patients’ own immune system to fight their diseases. More than 27 years later, she’s head of the NCI Vaccine Branch’s clinical trials team, still pursuing vaccines and immune-based therapies for both diseases.

No matter how you look at it, participating in clinical research will change your life. So said panelists representing several different vantage points—patient, physician-researcher, nurse, social worker and others—at a discussion jointly sponsored May 14 by NIH’s Office of Research on Women’s Health and FDA’s Office on Women’s Health. The event, “Meet the Faces of Clinical Research: Beyond Inclusion,” marked National Women’s Health Week.

Dr. Adrienne Farrar of the Clinical Center social work department Dr. Amina White from CC bioethics Juliana Ejedoghaobi, a CPA-turned-nurse Jamie Gentille, former pediatric trial participant Dr. Lori Wiener, who provides psychosocial support for patients and conducts research in clinical science
ORWH’s “Meet the Faces of Clinical Research” event featured panelists Dr. Adrienne Farrar of the Clinical Center social work department; Dr. Amina White from CC bioethics; Juliana Ejedoghaobi, a CPA-turned-nurse; Jamie Gentille, former pediatric trial participant; and Dr. Lori Wiener, who provides psychosocial support for patients and conducts research in clinical science.

“Diversity of perspectives is so important,” said NCI’s Dr. Lauren Wood, who served as keynote speaker. “We keep understanding more and more as science becomes a multidisciplinary enterprise that we can’t all stay in our silos of ‘I’m a chemist,’ ‘I’m a biologist,’ ‘I’m a physician,’ ‘I’m a bioinformatics person,’ ‘I’m a molecular immunologist,’ ‘I’m a communication specialist.’ Diversities of perspective allow you to ask incredible questions, identify answers and go down roads of investigation that you never even thought of.” Whether it be culture, gender, ethnicity, professional or scientific discipline—everybody can supply a perspective, she stressed.

An enthusiastic ambassador for the conversation, Wood offered the Ps and Cs of a career in clinical translational research: passion, people, perspective, providence, purpose, challenges, choices, collaboration, colleagues and conquest.

Thirty-year veteran NIH nurse Laura Lee FDA Assistant Commissioner for Women’s Health Marsha Henderson closes the discussion with her personal experiences as a clinical research participant

Thirty-year veteran NIH nurse Laura Lee (l) moderates the panel. FDA Assistant Commissioner for Women’s Health Marsha Henderson closes the discussion with her personal experiences as a clinical research participant.

Photos: Ernie Branson

“People and relationships are the single most important focus of your life,” said Wood, who’s spent the last nearly three decades forging bonds—with both her patients and her colleagues—at NIH. “People need to be the priority…True passion has to be outward-focused rather than inward-focused.”

In addition to Juliana Ejedoghaobi, a CPA-turned-nurse who received a bone marrow transplant as part of a study on sickle cell, and Jamie Gentille, former pediatric trial participant who’s now a senior manager at a children’s hospital and author who published her HIV secret in a 2013 memoir, panelists included Dr. Adrienne Farrar, who presented a social worker’s perspective; Dr. Amina White of the Clinical Center’s bioethics department, representing the bioethicist’s standpoint; and Dr. Lori Wiener, who gave her viewpoint as one who provides psychosocial support for patients—particularly children—and conducts research in the clinical science environment. Thirty-year veteran NIH nurse Laura Lee, who leads patient safety and improvement programs at the Clinical Center, moderated the panel.

The main emphasis of the discussion was to highlight the importance of inclusion in medical research, especially women and particularly in clinical studies. The event also served as a precursor to ORWH’s upcoming 25th birthday celebration.

“At 25, you still think you can do anything and change the world and we still think we can do anything and change the world,” joked ORWH director Dr. Janine Clayton, acknowledging the office’s silver anniversary.

“Diversity of perspectives is so important,” said NCI’s Dr. Lauren Wood, who served as keynote speaker for the ORWH clinical research event held recently in observance of National Women’s Health Week.

“Diversity of perspectives is so important,” said NCI’s Dr. Lauren Wood, who served as keynote speaker for the ORWH clinical research event held recently in observance of National Women’s Health Week.

“This [event] is a conversation,” she emphasized. “I challenge you to share your thoughts, ask your questions and don’t hold back from interesting ideas or comments. We really want to hear from you.”

Closing the event, but urging everyone to keep talking about clinical research, FDA Assistant Commissioner for Women’s Health Marsha Henderson spoke briefly about her experience as a participant in a study on glaucoma.

“We have a story,” she said of clinical research patients. “We have to commit to telling our stories and continuing the conversation.”

Gentille concluded, “I look at my experience [with clinical research] as a miracle that came exactly when I needed it.”

“NIH changed my life,” agreed Ejedoghaobi.

See the full event online at https://www.youtube.com/watch?v=F1_7BmKLbnI.

 


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