From their press release:
Recognizing that patient participation in clinical trials is the key to progress in medical research, Pfizer Inc announced today that it has entered into a collaboration with Private Access, the innovator in privacy-enhanced search technology, to create a new online community aimed at increasing clinical trial awareness and participation. The site will be the first to focus on patient privacy rights to connect patients, physicians and researchers with tailored information, tools and technology that will lead to more informed decisions about patient care, including clinical trial participation industry-wide.
Pfizer’s collaboration with Private Access will help address patients’ and physicians’ top concerns regarding research and clinical trials. The companies will work toward reducing the time needed to develop new and improved treatments by making it possible for researchers and investigators — based on express private access rights granted by the patient — to conduct more focused searches for clinical trial candidates.
Private Access’ patented technology allows patients to control to whom, and for what purposes, they grant access to see all or selected portions of their personal health information. By granting “private access” only to researchers focused on the conditions that interest them, patients can be more quickly and precisely matched to appropriate clinical trials while simultaneously protecting their confidential personal health information.
Nearly 85 percent of patients in a recent survey stated they were unaware that clinical trials were a possible treatment option, and 31 percent of physicians surveyed did not refer patients to trials due to, among other things, lack of information. According to a study commissioned by the Institute of Medicine (IOM), the number one reason patients who were aware of trials were not willing to participate was fear that their health information would not remain confidential.
“Many patients who could benefit from participation in clinical trials don’t enroll in them because they are not aware that potentially relevant research is under way or they cannot find a specific trial to meet their needs; others worry that they will lose control of their health information,” said Freda Lewis-Hall, M.D., Pfizer’s chief medical officer. “With unprecedented collaboration among key groups, Pfizer and Private Access believe we can build the preeminent online clinical trial community to be used industry-wide to share knowledge while giving patients the confidence and control to share their health information.”
The costs to find and enroll patients into clinical trials more than doubled between 2000 and 2005, and continue to climb. With study protocols becoming more complex, the number of clinical research studies increasing to more than 35,000 and patient participation in clinical trials declining, effective patient recruitment is a critical factor in successfully bringing new treatments to patients.
“A privacy-enhanced search engine for personal health information enables patients to simultaneously address their privacy concerns and improve access to care,” said Robert Shelton, founder and CEO of Private Access. “It is great that the Internet can be used today to find publicly available information for free in seconds or to locate potential employees for a small fee in minutes, yet it still takes months or years and often thousands of dollars per patient to locate individuals for clinical trials that might save or improve lives.
“By introducing technology that honors each patient’s privacy needs, we can leverage the efficiency of Internet-based search for clinical trial patients – speeding up the recruitment process and the discovery of new treatments,” Mr. Shelton continued.
Pfizer and Private Access will work together to bring a wide range of partners to the online community, including additional clinical trial sponsors, patient advocacy groups, technology providers, and other key public and private stakeholders. The portal will also encourage social networking on the clinical trial experience. The new platform and online community will be rolled out in phases, starting in late 2009.
“Patients are the most important stakeholders in medical research. By merging respect for their privacy with access to relevant and actionable medical information, we are giving patients more control over their destinies,” said Greg Simon, senior vice president for worldwide policy at Pfizer. “This collaboration has the potential to accelerate medical progress by putting patients’ needs front and center.”