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The Alliance for Clinical Research Excellence and Safety (ACRES), a Massachusetts-based non-profit operating in the public interest, and Texas-based for-profit San Antonio Express-News, an affiliate of the Hearst Communications Company, have formed a strategic alliance to create a blog as a vehicle for public outreach and education across the healthcare and clinical research endeavor. The blog provides an opportunity for the voice of patients and the public to be clearly heard in this important dialogue.
The ACRES' Accountable Research Blog is being piloted in the San Antonio, Texas market, and is projected to be extended to other Hearst media markets, both domestically and internationally.
In addition, the alliance partners will work together to develop and use the blog to conduct surveys on important research issues, to gather public feedback and provide educational blog opportunities to stakeholders in healthcare and biomedical research.
Currently, healthcare and clinical research studies are viewed with distrust and dissatisfaction by many patients and the public as a whole, in light of several high profile cases demonstrating lack of due diligence and fraud in clinical studies, including cases of mistreating vulnerable patients. This, combined with the complexity of accessing the healthcare marketplace and astronomical costs for treatment of diseases such as cancer and hepatitis C, has lead to a perception among many that healthcare and clinical research are more about profit than health and not to be trusted. At the same time, there is great public interest in health issues and a documented need to have better information about clinical research.
The blog, which was launched April 6th, will air a wide variety of views and will also attempt to fill gaps in the public’s knowledge regarding how clinical research studies are conducted, how public safety is taken into account, and what constraints currently exist in research. In addition to education and information about critical issues, the blog will explore opportunities and hot-topics. There will also be discussions of mistakes that have been made and explore the efforts-both positive and negative-that deal with these mistakes.
“For too long, the public has had to listen to a litany of disasters and hype about healthcare and clinical research”, noted Mary Tobin, Special Adviser to ACRES president and CEO, Greg Koski. “This blog gives the community necessary information along with a megaphone with which to speak to the healthcare and pharmaceutical enterprise-this is truly patient empowerment.”
The blog was conceived by Dale Lane of the San Antonio Express-News and ACRES vice-president for collaborative network development, Al O. Pacino, founder of HealthCarePoint, another key ACRES strategic ally. The blog will be managed through a team effort led by Sheri Campbell, Director of Business Partnerships for HealthCarePoint.
Noted Pacino, “As a patient cancer survivor and a clinical research trialist I know the importance of helping the general public fully understand the clinical research endeavor and how key stakeholders are working towards transparency and accountability in research.”
“We are very excited about facilitating this important conversation with real people who are more than healthcare consumers-we are engaging the people for whom this entire enterprise exists, in their interest, and we are anxious to hear what they have to say about the issues as they see them,” said Lane.