The Philanthropic Patient: iSpecimen Study Shows that Americans Want to Help Advance Medical Research

In the age of precision medicine, patients are willing to give of themselves to improve medical care and help others

Dec 16, 2015, 08:00 ET from iSpecimen

LEXINGTON, Mass., Dec. 16, 2015 /PRNewswire/ -- A new study commissioned by iSpecimen, a trusted source of customized human biospecimen collections, reveals that Americans want to support medical research and are willing to literally give of themselves. The study found 83% of Americans are willing to allow the use of their remnant clinical specimens in research, meaning once medical testing is completed, any leftover sample could be de-identified and made available to scientists who might need them in the search for new diagnostics or treatments. Close to two-thirds of the study sample were even willing to give an extra tube of blood if asked, for the sole purpose of use in research.

This readiness of people to give of themselves to help the health and well-being of others is what iSpecimen describes as today's "philanthropic patient." This medical philanthropy can be seen in other altruistic behaviors, such as registering for organ donation, giving blood, and enrolling in medical studies. Not surprisingly, the study confirmed that in contrast to the general patient population, blood donors and registered organ donors were even more willing to allow remnant specimen use, coming in at 91% and 90%, respectively.

Traditionally, participation in medical research has meant enrolling in a clinical trial, but this is not the only option available. Hospitals today are increasingly looking to patients for use of their leftover specimens for basic research. Many of today's most critical drugs have been discovered through initial research using biospecimens, for example, the breast cancer drug Herceptin®, which has a proven life-saving benefit and has been credited with changing the breast cancer treatment landscape since its arrival in 1998.1,2

In the age of precision medicine, the bounds of healthcare's potential seem limitless. The general public is reached on a daily basis with news about genetics, new treatments, and customization.  With increased awareness it seems likely that people may want to take part, and this was solidly confirmed. Further, the study showed that motivation to help was largely humanitarian, with respondents expressing altruism and camaraderie as reasons for wanting to help.

One condition of remnant specimen use – whether or not patients would like to be asked or told about the process beforehand – emerged as important to patients. Under the Health & Human Services' (HHS) Common Rule of 1991, patients need not be told of research use of specimens as long as the samples are leftover and de-identified. The findings, however, reflected that while people are very willing to donate, they would prefer to be informed and part of the process. Consistent with this finding, just a few months ago in September, HHS proposed changes to the nearly 25-year-old rule, including the requirement of consent for remnant specimen use. Proposed changes are expected to be decided upon in early 2016.

"We are proud to support our patients and their contributions to research," said Anne Lara, EdD, RN, CNE, CPHIMS, Chief Information Officer of Union Hospital in Maryland, part of a nationwide network of hospitals, labs, biobanks, and blood centers that use iSpecimen's technology to annotate, de-identify, and procure remnant biospecimens for research. "It is a win-win situation when we are able to carry out patients' wishes, providing them a chance to donate if they choose, while helping researchers expedite their work to find tomorrow's treatments and cures." Union Hospital does obtain consent from all participating donors.

Christopher Ianelli, MD, PhD, CEO of iSpecimen continued, "Especially at this time of year, with the holidays and season of giving, we are proud to play a central role in providing an outlet for the philanthropic patient. While specimen donation may not be for everybody, it is clear that a majority of Americans do want to contribute. As is the case with organ donation and blood donation, specimen donation is necessary and invaluable for the people whose lives disease affects."

The iSpecimen-commissioned study was conducted by Lab42, an independent market research firm. The firm surveyed 400 English-speaking, US-based adults over the age of 18, balanced to the census in terms of gender, age, income, and ethnicity. The full research paper can be found by clicking here.

About iSpecimen

Privately held and headquartered in Lexington, MA, iSpecimen is a trusted, one-stop source of customized human biospecimen collections. Compliantly sourced from our diverse partner network of hospitals, labs, and other healthcare organizations, our solid and liquid biospecimens are delivered directly into the hands of biomedical researchers using unique, turnkey technology. Scientists gain access to a ready supply of the high-quality, richly-annotated human biospecimens they need from the patients they want. Supply partners gain an opportunity to further contribute to biomedical discovery, as well their bottom line. Ultimately, healthcare advances for all. For more information about iSpecimen, please visit www.iSpecimen.com.

1 http://www.ascopost.com/issues/march-1,-2013/final-joint-analysis-confirms-life-saving-benefit-of-trastuzumab-in-patients-with-her2-positive-early-breast-cancer.aspx
2 http://blogs.fda.gov/fdavoice/index.php/tag/herceptin/

 

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