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almost 5 years ago

On behalf of patients

The Patient Engagement App 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 asked two patient advocates to share why this challenge is important to them as patients. We hope you’ll be inspired by their stories and look forward to seeing your apps. Good luck!

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 aren’t translated in to decision support 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!

From Lane Rasberry – WikiProject Medicine Contributor:

I contribute health information to Wikipedia, and as a participant in that project, I see all kinds of people coming to the encyclopedia to collect and share information. While we Wikipedians appreciate the public interest in health information, and while we do feel that people should use Wikipedia's articles with other resources to inform their health decisions, we also want to see a revolution in communication between people with health information and people who are trying to learn.

For clinical research to succeed and for participants to become more fully knowledgeable about the impact of their volunteering, the communication in clinical trials must be aligned with the natural ways of communication, which the research participants themselves use. Nowadays this means more online channels, including apps, social media, and websites.

There is a lot of mutual benefit to be gained by better communication in all sectors. I look forward to watching the developments in communication technology for clinical research.