It is with a very heavy heart that I must share with you that yesterday, February 7, the PF community lost a gentle soul and true hero, Prasha Tuladhar. She was 31 years old.
Prasha is the reason that Responsum for PF exists.
In 2014, when a team of graduate students from Carnegie Mellon University and I needed to select a therapeutic area to test the concept of an internet search tool and customized newsfeed for patients with chronic disease, we decided to focus on PF because one of our patient volunteers – the one who gave the most of her precious time and incredible mind to our researchers – was Prasha.
In an interview with Bill Vick, an IPF patient and the founder of PF Warrior, Responsum CEO Andy Rosenberg highlights the platform's value as a a one-of-a-kind tool designed to improve patients’ knowledge, grow their self-confidence and provide for the organization and coordination of their health care information.
Today's the Big Day - Responsum Health and the Pulmonary Fibrosis Foundation Launch a Revolutionary Patient Information Platform for PF Patients
Today is the day we begin to change the way patients use the Internet forever.
Today, is the day when everyday patients begin to gain the ability to use the “world wide web” to inform and empower themselves with trustworthy, meaningful, and current information about their health and their lives.
Today, a leading patient advocacy group - the Pulmonary Fibrosis Foundation (PFF) – announced it is bringing its unmatched knowledge base and reputation to build a powerful partnership with Responsum Health, a leading innovator in online patient information and engagement. Through this partnership, the PFF and Responsum have created a first-of-its-kind technology resource for patients with pulmonary fibrosis.
Pulmonary Fibrosis Foundation and Responsum Health Launch Online Patient Newsfeed and Resource Platform
CHICAGO, Jan. 23, 2019 – Pulmonary fibrosis patients, their loved ones and care team can now connect through a platform jointly launched by the Pulmonary Fibrosis Foundation (PFF) and Responsum Health. Responsum for PF, a personalized newsfeed, support resource, and data organizing tool for individuals living with pulmonary fibrosis (PF), is a free service. The platform enables patients to easily access trusted, comprehensive, and understandable content. Visit www.responsumforpf.com
On January 23, 2019, the Pulmonary Fibrosis Foundation and Responsum Health announced a platform that will help individuals living with pulmonary fibrosis (PF). The free platform, Responsum for PF, is essentially a personalized newsfeed, support resource, and data organizing tool for individuals with PF, that allows patients to easily access trusted, comprehensive, and understandable content
This past summer, in preparation for our November 2018 launch, Responsum conducted a multi-level pilot study with dozens of PF patients in order to test the platform’s effectiveness and enlist patients in helping us to devise, design and re-engineer, as needed. The results, which are captured below, were amazing.
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.
Write something about yourself. No need to be fancy, just an overview.