Fact Checked

Innovation to Empower Patients with Cancer: FDA Project Patient Voice

How are decisions about you and your family’s healthcare made? Do you go into your doctor’s office knowing your diagnosis and how to treat it? Does your doctor tell you what to do, and you do it without hesitation? Hopefully, your answer was “no” to both of those questions. 

It’s a team effort. Your healthcare team provides knowledge and expertise in their respective fields, with the patient front and center, discussing preferences and sharing values. After all, a boat will go a lot further when everyone is rowing in the same direction. 

Over the last several decades, health information, especially for professionals, has come a long way. So much is at our fingertips. But what about patients?   

Paging Dr. Google?...  

As a patient, where do you get your health information – about diseases, procedures, medications, treatment options, etc.? Dare I say Google or another search engine on the internet? Search engines certainly can be helpful tools to efficiently get to things, especially when you know what you’re looking for, but it can also be dangerous. There is a lot of misinformation and non-reputable sources out there. 

How about personal anecdotes from friends and family? Do you really trust your friend's coworker’s roommate’s experience with that one drug (they think they remember the name) from five years ago? Probably not, but it’s hard to know what to trust these days.

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The Big “C” 

Many diagnoses and uncertainties with your health can be difficult, but few diagnoses hit patients and their families harder than cancer. Not only does the disease, and often the treatment, take a physical toll on the patient, but a mental and emotional one as well. 

Fortunately, there are a lot of supportive cancer communities and organizations to help lift patients and their families. There is also a big focus on research and development in this area, bringing many new treatment options to the market every year. More options and data are good, but also hard to manage when discussing all the pros and cons as a team. 

Some, often more objective, data is reported in studies, and some patient experiences are shared online in forums and blogs. However, there is one new innovative pilot project that has the potential to pull some of these strengths together and empower patients more.

FDA Project Patient Voice

In late June, the Food and Drug Administration’s Oncology Center of Excellence announced it was launching a new pilot project called Project Patient Voice. It’s an online platform for patients, families, and healthcare providers to get access to patient-reported symptom data from cancer clinical trials. 

The hope is that this information will help with discussions between the patient and the healthcare team. Although this information is commonly collected during trials, it’s not shared to this level in the publications and drug labeling information. It’s a step in the right direction, certainly, but with anything, there are benefits and limitations. Let’s explore. 

What PPV is (and some potential benefits)

  • Patient-reported outcomes (e.g., side effects) from clinical trials are usually gathered from questionnaires or interviews during the study. 
  • Reputable source of information that will help make patient-centered clinical decisions.
  • Pilot project in its first phase, so there is currently only one trial listed. They are gathering feedback and plan to grow the website to be most useful for patients.
  • See the website to read more about PPV, see the first study and how the information is displayed, and give feedback yourself!

What PPV isn’t (and some potential limitations)

  • Does NOT replace guidance from your healthcare providers and FDA approval data. It is meant to be complementary.
  • In its current state, it does not include demographic information (e.g., age, gender, race) from the patient reports, which may make it harder to apply to other patients.
  • It will not include ALL the information you need to make decisions related to cancer care. 
    • Treatment decisions must include many factors (e.g., cancer type, effectiveness, safety, side effects, drug interactions, schedule, cost).
    • Participation is voluntary by drug companies (i.e., this is in addition and outside of the drug approval process), so not all studies and all drugs will be available.

A lot goes into making clinical decisions for ourselves and our families. There are many data-driven, but also value-driven, considerations, especially when it comes to cancer care. It is important to lean on your healthcare team, but it is also nice to have reputable information at your fingertips. Information can empower patients and families to have a more active role in the conversation. FDA Project Patient Voice is an innovative step in the right direction. It will be exciting to see how it grows, how it is optimized, and how it is used!

Reference List

Published September 7th, 2020 by Dr. Audrey Kostrzewa, PharmD, MPH, BCPS
Fact Checked by Chris Riley

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