By Robert Saint Laurent, Responsum Editor
Those impacted by IPF know that raising disease awareness is critical to advancing research and improving quality of life for those living with the devastating lung disease.
According to PFF, idiopathic pulmonary fibrosis affects one in 200 US adults over the age of 65. Roughly 100,000 Americans are currently living with IPF, with 50,000 new diagnoses and an estimated 40,000 deaths—rivaling breast cancer—occurring annually. All of this is associated with a large economic and healthcare burden, as respiratory care comprised nearly 37% of all healthcare costs in 2011.* Yet despite these startling statistics, IPF hasn’t received the fanfare and funding of breast cancer and other chronic diseases.
Responsum is featured this month in a highly-respected podcast called Health Literacy Out Loud (HLOL). We were honored that HLOL founder and podcast host Helen Osborne decided to feature Responsum and its approach to Internet curation and content customization as Program #165 in her long running series on exploring issues around patient literacy.
It has been a while since you last received news from me about Responsum and our efforts to develop a free, personalized newsfeed and patient platform for Pulmonary Fibrosis. We have been busily researching, designing and now finally developing a revolutionary tool for patients, and have been making great progress. We expect to be ready to share our new tool with you in the fall of this year.
By way of a very quick update, I am excited to report that the team at Responsum is moving swiftly ahead with the development of a revolutionary, personalized online tool for PF patients, their caregivers, and their supportive circle of family and friends. Our professional research and writing team has already curated and crafted a library of over 300 article summaries, and our IT team is in the process of developing a customized newsfeed of articles, clinical trial abstracts, advocacy platform and various other types of functionalities that real patients have told us they want to have.
Researchers have found an overwhelming need for better quality and reliability in online PF-related information.
Because idiopathic pulmonary fibrosis is a lesser known condition, questions often arise. People use the internet to find both scientifically proven and anecdotal information about symptoms, management techniques and medications. However, new research reveals that the internet may not always be reliable regarding PF.
In response to a recent “conversation” in the New York Times, Responsum Founder Andy Rosenberg offered the following thoughts on the need for better tools so that patients can maximize the value of the Internet, while avoiding its many pitfalls.
In the span of two years, I lost two very important people in my life to rare diseases. My mother passed away after a long, courageous fight with a rare precancerous condition that eventually turned deadly. And one of my best friends, who was also godfather to my little girl, took his life to escape a painful rare nerve condition from which he couldn’t find treatment, relief or hope