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Patients at the Center of the Research Battle

December 5, 2018
Posted by: Gerald “Pharmacist Jerry” Finken, RPh, MS; Contributor, Meghan Mosser

Photo credit: oregoncenterfornursing.org

Why do we create new drugs? For the patients.
Why do we research cures? For the patients.

And yet, we often forget that the research itself is fueled by patients and overlook or ignore their importance and contribution along the way to finding cures.

An article was published in Forbes discussing the importance of patients being at the center of the research battle, specifically with cancer.

The article argues that pharmaceutical companies and the academa should more actively include patients in their research initiatives.

At the heart of the idea is that patients are the likely address to find cures, rather than somewhere out there in the great unknown.

The High Value of the Patient

Patients are willing to be the proverbial guinea pigs in clinical research studies both in the hope of a cure and for the good of medicine.

In fact, many of the cures that we chase after are found thanks to the patience and goodwill of the patients, who agree to be poked, prodded and injected.

No poking, prodding and injecting – no advancement in research to discover ways to improve acute care outcomes, chronic care outcomes or curative outcomes.

And yet, sadly, patients often get overlooked.

Why? Egocentrism. Financial gain. Fame.,,,,for the researcher and the pharmaceutical company.

Rarely is a patient credited as part of the discovery team or is the information they helped to discover shared or discussed with them.

Patients are left feeling like statistics or lab animals. At the most, they are paid for their participation. As a whole, they are treated as numbers and data points.

But patients are more than numbers. They are human beings with thoughts and feelings and ideas and fears.

Heck, they find ways to make placebos effective!

They are the ones who see their family members die of the very diseases we are researching.

They have an emotional attachment to research; especially when it comes to life threatening diseases.

Often times they are scared of the current research model. We must take their fears seriously.

Change

What if we looked at research as more than collecting numbers? And, what if we looked at patients as more than a means to a statistic?

Patients have a valuable brain and a cognitive approach that could benefit research in a new and exciting way.

Emotional data could not only change the way we conduct research, but enhance the outcomes we collect.

Here’s an example: A pharmaceutical company is doing research on a drug to cure Alzheimer’s. The catch is that the drug has to be taken ten times a day and for 15% of patients it causes nausea.

The FDA’s job is to clinically evaluate whether or not these barriers would be worth it to patients. We’re leaving the decision in the hands of the FDA. But what about the patient?

If you were to collect emotional data you may find out that for 98% of patients the benefit outweighs the barrier.

And, if we would collect emotional data, we may actually be given insight into the “real” cause of the disease.

For instance, we should have pharmacists ask the patient, “What do you think caused your condition?” and then actually document it!

We need to place a higher value on the emotional data that the patient provides.  Their thoughts and experiences can fuel how and why we do research and provide “real” world data and information.

The industry is trying to change with the concept of patient-centricity.  For the industry to evolve, though, both the researchers and the industry need to take this further.

Redistribute the Risk

A final thought, for now….

We also need to redistribute the risks involved with a clinical trial.

At present, the patient is the only one assuming all the risk (aside from the financial risk of the investors) when it comes to drug development.

Researchers, CROs CMOs, etc. assume no risk at all.

This too needs to change too and will be the discussion of a future blog.

How do you think we should include the patient in future clinical trial? I invite you to share your thoughts.

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