Wednesday, February 5, 2014

On behalf of patients: Why you should participate in the Patient Engagement App Challenge

The Patient Engagement Challenge is more than a software contest – it’s about changing how we develop medical treatments and support patients throughout clinical trials. As the submission period winds down, we’ve had patient advocates to share why this challenge is important to them as patients. Today we hear from Stephen Mikita – Patient Representative for the Clinical Trials Transformation Initiative.

Patient Engagement. Patient Advocate. The Patient’s Voice. Patient Stakeholders. Patient-centricity. These terms have become the new buzzwords of drug development, but what do they really mean? What value do patients bring? Why do patients matter to product development? Why should we include them, and what do they contribute?

There is a crisis in clinical trials. Clinical trials are costly, inefficient, and sometimes even irrelevant to the intended target population. Patients are justifiably frustrated. The system is broken. There is an incredible waste of resources on repetitive activities. There are too many delays based on unnecessary bureaucracy. More investigators are dropping out. Recruitment and retention of trial participants are abysmal. The information that patients desperately need is inaccessible to them. And, data results are not translatable into decision-supported tools.

That’s the bad news.

The good news is that while the clinical trial ship is sinking, unlike the Titanic, it is salvageable. It can be rescued, and help is on the way. By involving, listening to, and incorporating patients, we can transform the drug development enterprise. Along the research continuum, patients and industry are engaging in real dialogue and innovative design. Patients are specifying unmet needs and therapeutic burden. They are identifying issues that truly matter: such as quality of life and patient reflected outcomes.

Patients can also provide valuable input on barriers to participation, study endpoints, risk-benefit analysis, recruitment, informed consent, and data feedback.

If you want to make a difference to patients, invite them to the table!

We are more than patients. We are partners and teammates. It is high time that we work together more closely to achieve our goals!

The submission deadline for the Patient Engagement App Challenge is next Tuesday, February 11.  Find out more about the rules and deadlines here.  Have any questions about participating?  Email Jennifer Pereira.




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