How Online Forums Can Help Patient-Centered Drug Development: Why Should We Treat Patient-generated Online Content Seriously

In the August issue of New England Journal of Medicine (NEJM), Dr. Ethan Basch, an oncologist at Memorial Sloan-Kettering Cancer Center wrote an article titled Toward Patient-Centered Drug Development in Oncology. Dr. Basch pointed out there is a lack of patient perspective in oncology drug development—when asked about symptom information of a treatment by patients, oncologists are often not able to provide it because such information is not included in the FDA-approved label. Dr. Basch noted that information about patient experience, if ever gathered in a pivotal clinical trial, is mainly through questionnaires focused on health-related quality of life rather than being included in the protocol-specified hypotheses and analytic or statistical plans. However, things might soon change– the FDA recently issued guidance on the use of patient-reported outcomes (PROs) in drug development, which may encourage the pharmaceutical industry to include the measurement of PROs in future drug development.

Patient-centered drug development is a key component of patient-centered care (photo credit: www.policymed.com)

Patient-centered drug development is a key component of patient-centered care (photo credit: http://www.policymed.com)

The issue Dr. Basch discussed is of great importance as patient-centered drug development is a crucial component of patient-centered care. Cancer patients face some of the greatest challenges when battling their illness. Knowing the effects of the medications they are taking will greatly benefit them both physically and psychologically.

Although it may take a long time for the industry to establish its own mechanism to gather PROs, the patient community has been actively using online communication channels, notably online forums to share experiences, provide recommendations and even collect self-reported data for clinical analysis. If handled properly and smartly, these data can be valuable for physicians and the pharmaceutical industry to measure PROs and provide additional clinical insights to improve patient outcome.

For example, a search of “docetaxel,” a common chemotherapy drug for breast, lung and prostate cancer returned more than 60 conversation threads on Inspire, one of the most active online communities for cancer patients. Most of the threads included in-depth discussions about the drug’s effects from first hand experience. Patients on Inspire are also discussing their experiences with investigational drugs and clinical trials, often offering vivid and detailed descriptions of how they respond to a treatment.

Although these anecdotal comments, when reviewed separately, may not be analyzed in a statistical or clinical way, they may still provide legitimate clinical findings in the age of big data–crowdsourcing and datamining powered by advanced data analytics may eventually be able to translate words into meaningful statistics that can used to evaluate the safety and efficacy of a drug.

But even in the short run, oncologists and the industry should take patient-generated content seriously.

Anecdotal accounts and qualitative analysis can lead to meaningful and actionable insights

In March 2012, a team from the Minnesota Department of Health noticed multiple Facebook posts about strep throat cases followed a dinner for a dance team and quickly identified the outbreak. A total of 18 primary cases ultimately were confirmed. The study published recently in Clinical Infectious Diseases highlights the effectiveness of using online channels for public health surveillance in the digital age. The same concept applies to gathering patient perspectives on cancer treatments and cancer drug development through online forums as well.

Patients need guidance for verifying and digesting online content 

The reality is that cancer patients will increasingly rely on use-generated content to inform their treatment decisions. Although not everybody would agree it is a physician’s job to educate a patient how to use Internet smartly, a digital savvy oncologist will likely reach better outcome by addressing concerns the patient may have because of something he/she saw online and helping him/her make sense overwhelming online chatter. The same opportunity rises for the industry as well.

As Dr. Basch said “the patient experience of treatment with a given drug must be regarded as essential information about the properties of the product.” We now actually already have a giant repository for the information. Individuals and organizations who can capitalize on the opportunity may finally help oncologists answer “How does this product make people feel?”

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One Comment on “How Online Forums Can Help Patient-Centered Drug Development: Why Should We Treat Patient-generated Online Content Seriously”

  1. Editor August 7, 2013 at 3:06 am #

    Reblogged this on Health Care Social Media Monitor.

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