The Voice of the Patient
Raleigh, NC, resident Patty Spears’ personal cancer journey started in 1999 after she discovered a lump in her breast. Eight years later, Spears’ status as a cancer survivor is the driving force behind her volunteer work as a caBIG™ Patient Advocate, a role within caBIG™ that gives cancer patients a voice throughout all caBIG™ activities, including the design and implementation of new tools. Spears and her fellow advocates ensure that the community’s ultimate goal—to reduce patient suffering and death due to cancer—is kept fresh in the minds of caBIG™ developers and adopters.
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caBIG™ Integrative Cancer Research Workspace Patient Advocate Patty Spears.
Courtesy: Patty Spears
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A Personal Cancer Journey
Spears had been diligent about her preventive care, having undergone a mammogram and a follow-up exam in the two years prior to her diagnosis. But her discovery of the lump launched her on a 12-day roller coaster ride of tests and exams, in which one doctor noted that her tumor grew significantly in only a week. Chemotherapy slowed the aggressive growth of the tumor and the lump was reduced in size. Surgery and radiation therapy followed. "All the right doctors were in the right place at the right time—which probably saved my life," Spears said.
Even as she was declared cancer free, Spears, like many cancer survivors, held a strong desire to ensure the cancer would not recur. Finding an appropriate clinical trial was an arduous task. Spears, however, had the benefit of knowledge gathered as a research technician that enabled her to navigate the Internet to find a trial for which she qualified. Her search led her across the country to a Phase I/II clinical trial held by the Tumor Vaccine Group at the University of Washington in Seattle, WA. The trial in which Spears participated was for a vaccine to prevent cancer recurrence. Her participation helped establish a dose-response curve.
Through her ordeal, Spears sought other women in the cancer community for support. Through the Internet, Spears met another cancer survivor—"Janice"—who lived in Seattle. Janice opened her home to Spears every month when Spears came to participate in the clinical trial; they had dinners together, and became friends. Janice has since passed away, but the generosity and exchange of support in that experience had a profound effect on Spears and continues to inspire her advocacy work with caBIG™.
Journey into Advocacy
Another cancer survivor who helped Spears through treatment introduced Spears to the local affiliate of the Susan G. Komen for the Cure. All her life, Spears had volunteered in many areas, but as a cancer survivor, "cancer advocacy quickly rose to the top of my ‘causes’ list." Spears volunteered for Komen in many different positions. Through Komen, Spears met Barbara Parker, who had been a Patient Advocate for caBIG™.
Parker encouraged Spears to further her education by attending Project LEAD (Leadership, Education and Advocacy Development), an innovative program offered by the National Breast Cancer Coalition to train Patient Advocates. Through LEAD, Spears’ experience came full-circle as she learned the results of her vaccine trial and the ways in which her participation had helped advance the search for cancer cures. Spears noted, "As an individual patient, your participation in a trial might not necessarily benefit you, but it brings the science forward."
Her new knowledge gained from LEAD, combined with 23 years of professional experience as a research technician, prepared Spears for her current position as a Patient Advocate to the caBIG™ Integrative Cancer Research (ICR) Workspace, which she began in April 2005. Spears also served as a Patient Advocate to the Tissue Banks and Pathology Tools (TBPT) Workspace from 2005 to 2006. In addition, Spears has volunteered as a local Patient Advocate for Duke University to discuss the development of the Cancer Central Clinical Participant Registry (C3PR), a caBIG™ clinical trials management tool.
Bringing a Fresh Perspective to caBIG™
Currently, there is at least one Patient Advocate on each workspace. They attend teleconferences and face-to-face meetings, providing the patient perspective in order to help ensure that caBIG™ will ultimately benefit the patient by improving patient care and outcomes.
Spears’ personal experiences as a patient have given her an invaluable and fresh perspective on the tools developed by the caBIG™ community. First and foremost, she points out, "these tools are to benefit patients—it’s not all about technology per se, but about technology to help patients." She has also spoken up on issues of security and patient data confidentiality.
Her perspective as a researcher who uses bioinformatics tools has led Spears to emphasize usability as an up-front consideration in tool design. "The sooner you start thinking about usability issues, the better it is for all," commented Spears. Ease of use has been a major consideration for many tools, including GenePattern, a microarray analysis tool.
These contributions, as a Patient Advocate in the ICR and TBPT Workspaces, led Spears’ colleagues to present her with the 2007 Patient Advocate Award at the caBIG™ Annual Meeting this past February. The award was an acknowledgement of Spears’ dedication and substantial contributions to the initiative.
"As caBIG™ moves towards Enterprise adoption, the roles of Patient Advocates may change and be re-defined," Spears explained. Currently, there are 10 Patient Advocates who each play important roles and all have different strengths. Many advocates who began before her paved the way, and advocates will continue to provide essential patient perspectives for future developments within caBIG™.
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