A new online platform that pulmonary fibrosis (PF) patients, their friends, family, and caretakers to connect and get information about the disease, was launched recently by the Pulmonary Fibrosis Foundation (PFF) and Responsum Health. The service is free and its purpose is to offer PF patients access to trusted and understandable information about their disease.
Responsum for PF (responsum is derived from the Latin word for “answer”) was developed by a team of experts, and based on more than four years of patient interviews and input. The platform aims to provide PF patients with answers to important questions, including information about the patient’s medical condition, available clinical trials, and available therapies.
Patients also are offered means to organize their health information, find local patient support groups and services, as well as help with legal issues about policies related to their healthcare.
“Our goal is to ensure that every patient has access to the most accurate information available so that they can make informed decisions about their treatment and their life choices,” Gregory P. Cosgrove, MD, chief medical officer at Pulmonary Fibrosis Foundation, said in a press release.
The Pulmonary Fibrosis News forums are a place to connect with other patients, share tips and talk about the latest research. Join today!
“Responsum for PF minimizes the risk that the information patients find online is outdated, inaccurate or misleading,” Cosgrove added.
The platform includes a database containing more than 500 article summaries, presented in a personalized news feed, that have been examined by the Pulmonary Fibrosis Foundation. The patients can comment, rate, and share the news feed summaries.
Another function provides patients direct contact with their healthcare providers, to get more detailed information about the featured news articles. This interactive function, besides allowing patients to share their profile (or “one-sheet information”) with family, friends or healthcare providers, it also enables shared decision-making based on published news and the patients’ needs.
Responsum also offers an assistance program, through Patient Services, to extend financial support and guidance to uninsured or underinsured patients.
“While the Internet offers the promise of unfettered access to massive amounts of information, patients can easily find themselves overwhelmed by too much or underserved by inaccurate, inappropriate or overly complex content. Responsum solves that problem,” said Andrew M. Rosenberg, founder and CEO of Responsum Health.
“We all agree that a better-informed patient makes for better outcomes, and that is our number one goal,” Rosenberg said.