Issues in Biobanking for Research

Paula Kim

Founder and CEO
Translating Research Across Communities (TRAC)

From ecosystems to computer systems, our society’s ability to function depends on highly complex infrastructures, often linked together by the collaborative efforts of different groups. For Paula Kim, Founder and President of Translating Research Across Communities (TRAC) and Principal of Paula Kim Consulting, these systems are key, particularly in the field of biobanking and biospecimen-based research.

Kim has always been intrigued with and motivated by the role that systems play in our society.

In 1999, she co-founded the Pancreatic Cancer Action Network, Inc. (PanCAN), the first and only national patient advocacy organization for that disease, and instituted the first national programs for pancreatic cancer in patient services, national grassroots volunteer awareness, and privately funded career-development grants. Kim led public policy efforts that yielded an unprecedented increase of over 200% in federal government investments for pancreatic cancer research, from $17.5 million per year to over $54 million per year in 2005.

It was during her research and planning for PanCAN that Kim noticed the need for improved patient services and education, early detection, innovative treatments, and research funding for this disease. These needs fueled Kim’s desire for a research network aligned with the patient community, and led her to the fields of biospecimen research and personalized medicine.

Key issues of biobanking

According to Kim, biospecimen-based research is progressing at a rapid pace, simultaneously bringing key issues to the foreground that directly affect the future of post-genomics science. For Kim, there are two key issues that must be addressed before the field can fulfill its potential: biospecimen technology and public awareness.

“Technology that enables scientists to utilize data gleaned from interrogating biospecimens is advancing at a fast rate,” says Kim. But she believes that the systems needed to make use of all those specimens and data are not in place. She advocates a national biobanking system, accompanied by a national biospecimen donating system and other coordinated ways to share both the biospecimens and the results of biospecimen-based research.

Kim’s dedication to patient advocacy groups also makes her closely attuned to public perceptions. She believes patient communities are largely unaware of the fundamentals of biospecimen-based research, and its benefits. This lack of awareness is a detriment to the research community, because poorly-informed patients may not donate much-needed biospecimens, and may not advocate for biospecimen-based research. But patients are a powerful force in science, and Kim believes that the science community must forge connections with the patient community in order to make any significant progress. “Scientists are focused on collecting biospecimens for research, but I want to carve out, right now, an aspect of this area for patients that makes such research more meaningful for them.”

Role of patient advocacy groups in biobanking

For Kim, patient advocacy organizations play an integral role in a well aligned biospecimen-based research effort. “Advocates can be the strongest allies or the strongest enemies to this issue,” states Kim, since they are often relied upon to be credible sources of information for patients. One of the biggest obstacles is that researchers and the private sector at times have trouble communicating with patients and disseminating their experimental results, making it even more important for advocacy groups to stay aware of the most current information. Kim believes that patient-centric organizations, which focus on fostering dialogue and reporting information, are the natural choice to help overcome this obstacle.

“The research community doesn’t have the time, or the resources, or sometimes even the interest in building relationships with patient groups to the level that I believe they should,” she says. She wants to see patient advocacy groups function as the central node of activity in biospecimen research. “Programs like BioBank Central are certainly going to help, because this website is an excellent hub of information,” she adds.

In addition to helping patients and researchers connect, patient advocacy groups must also work with the media to ensure that the public has an accurate picture of the progress in biospecimen research. Rather than focusing on the newest drug, as is the current trend in media, Kim wants the media to pay attention to the exciting science around the use of biospecimens themselves. “Where advocates have an opportunity,” says Kim, “is to ensure that biospecimens are not the ‘forgotten subject’. I think with the right kind of education, the media and the public are going to understand that without the biospecimen, you can’t discover and develop the new drug.”

Kim’s new initiative, Translating Research Across Communities (TRAC), is fostering more links between patients and the scientific community. This program helps organizations accelerate the biomedical research process through a better understanding of patient needs, and helps develop infrastructure, relationships, communication, and knowledge management. It is only through such a coordinated system that she believes biospecimen research can truly advance and ultimately help patients. “Everybody has a stake in the game,” says Kim, “and I think if you have a stake, then you also have responsibility to the issue.”

This article is based on a personal interview with Ms. Kim and on background material on the organizations she has founded.