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Idea Quantifying Patient-Centered Values for Cancer-Treatment Outcomes

By Marie Connelly | 09 Dec, 2014

Idea submitted by: Joanne Buzaglo

The Cancer Support Community (CSC) and Duke Clinical Research Institute (DCRI) want to disrupt the way the FDA and pharmaceutical companies determine the value of current and new cancer treatments by incorporating patient-determined preferences. The idea is to quantify cancer patients’ value for treatments and treatment outcomes using stated-preference research.

Regulatory decisions are informed by advisory committees largely composed of scientists and clinicians. Although the clinical trial evidence that they review may include information on patient-reported outcomes, these data do not provide direct information on the willingness of patients to accept a treatment’s risks and benefits.

We propose to design and administer a discrete-choice experiment that incorporates general positive and negative features of cancer treatment to over 7500 members in CSC’s Cancer Experience Registry (CER). The results will determine the value of cancer treatments from the patient perspective. The group will develop effective materials and publications to disseminate study results to clinical, regulatory, and patient audiences to transform the way in which the patients’ experience can be used to inform the FDA, drug developers, payers and other stakeholders in their respective decision-making processes.

The technology represents a dynamic web-based portal that uses interoperable and interactive features to connect and form a bridge between persons impacted by cancer and research. The technology allows for an interactive learning environment and ongoing patient engagement. A person or caregiver of someone living with cancer can join the Registry and create a username and password protected profile, so that they can share their experience, learn from their peers and other experts as well as participate in ongoing research.

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Joaquin Blaya, PhD Advisor Replied at 9:40 AM, 13 Dec 2014

Joanne,
This sounds very interesting. I'm guessing the patient's would interact with this either via a web site or an applicaiton, but what would the patient or their caregiver get from giving their perspective? Perhaps, additional access to clinical trials or something else?

This Community is Archived.

While this community is no longer active, we invite you to review and recommend past posts and resources. Membership for this community is closed, but we hope you'll join us in one of the many other communities on GHDonline.

Moderators of Technology for Patient Engagement and GHDonline staff