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Patients Seek a Bigger Role in Medical Research

October 26, 2018

The ultimate value of medical research? Making sick patients well and keeping healthy patients healthy. It goes without saying.

Then why do patients sometimes feel like an afterthought?

Lung cancer survivor and activist Bonnie J. Addario describes the problem from her perspective in Forbes: “Today there exists a holy trinity for cancer research: pharmaceutical companies, academia and patients. For far too long, patients have been the lesser party in this symbiotic relationship, viewed as merely the benefactors of the work being done. Academia and pharma call this process ‘translational medicine,’ where the information and data collection flow one way, from them, to the patient.”

It’s disappointing that patients like Addario feel marginalized in research. Given that they generally lack medical training, what should their role be?

How patients and individuals contribute to research

In addressing this question, Addario reminds us of the work that patients do: “We give our tissue samples, blood and plasma. We suffer the poking and prodding, the exams and the humiliation of being treated like specimens rather than people. We submit, because if we didn’t, data and treatments would not exist. Many of us become advocates and give even more time, money and amplification to the cause. Given all this, is there any doubt that the cure lies with the patient?”

From our perspective, cures certainly do lie with the patent as part of a highly collaborative, collectively beneficial process. Patients provide essential biological specimens that are imperative for understanding how disease, treatment and cures work. These specimens, as well as patient histories, also provide critical data for predictive analytics, biomarker discovery and precision medicine.

Addario argues that more patient involvement in clinical trial design could improve clinical trial participation, noting that only 4 percent to 5 percent of cancer patients participate in clinical trials. Meanwhile, 1 in 5 cancer clinical trials fail due to insufficient patient enrollment, according to the American Cancer Society (PDF).[1]

Patients are the pivotal point of research

To be clear, we are certain that pharma, biotech companies and academia are doing their best to help patients and the world. Patients are undoubtedly the number-one inspiration for our work at iSpecimen as well. In fact, we have seen and benefited firsthand from the fruits of innovative medical research that has helped extend the life of a former cancer patient who is now healthy and thriving on our team.

Addario’s points capture the voice of many and warrant due consideration, especially as we face a growing demand for biological specimens, specimen data, and patient data for decades to come. Her comments are very much aligned with our research, outlined in a report you can find on our website, which found that patients are very willing to play a role in research by contributing specimens.


Enabling increased specimen sharing

For us, specimen sharing is indeed, and always will be, about the patient. Fortunately, advancements in technology continue to increase specimen suppliers’ ability to share the vast numbers of samples patients are generously donating every day.

Researchers seeking compliant, richly annotated biospecimens that are available in abundance, as well as samples that are highly specific and hard to come by, can gain immediate access to an extensive global network of diverse specimen suppliers via a technology platform like the iSpecimen Marketplace. From banked biospecimens and clinical samples to prospective collections, researchers can join the marketplace and begin a streamlined, centralized, end-to-end process of getting the biospecimens needed to advance their research.

As always, patients are the point.

[1]The American Cancer Society points to a host of reasons for low enrollment.

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