Earlier this month, our Alliance Ambassador Claudia Alarco Alarco and I ran an exhibit booth at the 5th Biennial Pulmonary Fibrosis Foundation Summit in San Antonio, Texas. Over 300 patients attended this incredible gathering, along with large numbers of health care professionals, researchers, and academic leaders. The PFF put on an impressive event: for three days, it was the true staging area in humanity’s war with this dreadful disease.
This Summit also represented an important turning point for those of us at Responsum Health, where we’ve been working in relative obscurity – alongside dozens of pulmonary fibrosis patients – to develop a better way for patients with chronic conditions to harvest the Internet for useful, current, and trustworthy information.
This was the third year in a row that we participated in an annual PFF event (including last year’s volunteer gathering in Chicago) but it was the first since we launched the Responsum for PF app.
What a difference a year makes!
Responsum Health Delivers Information and Engagement Platform for Pulmonary Fibrosis Patients with Launch
Responsum Health is Partnering with the Pulmonary Fibrosis Foundation (PFF) to bring vetted, trustworthy and personalized content directly to patients' mobile devices with the Responsum for PF app
Washington, DC—September 17, 2019 – Responsum Health (“Responsum”), a revolutionary online platform and community convener for patients with chronic conditions, today announced the launch of their first mobile app, available for iOS and Android. Following the rollout of Responsum’s web-based app for pulmonary fibrosis patients in January 2019, this all-mobile experience offers a faster, smoother experience for users, and is available for iPhone, iPad and Android devices for free.
Today’s launch of the PF app brings Responsum one step closer to its vision of a world in which every patient with chronic disease has the power of a trustworthy, professionally-vetted Internet at their fingertips.
Responsum Health Founder and CEO Andrew Rosenberg said, “We’re extremely excited about this app. It is a milestone in our mission to revolutionize the way patients get their health care information. While the Internet offers patients the promise of unfettered access to massive amounts of information, we know they can easily find themselves overwhelmed by too much, or often underserved by inaccurate, inappropriate or overly complex content. Responsum Health solves that problem. And at the end of the day, a better-informed patient makes for better outcomes, and that is our number one goal.”
The Responsum for PF app will provide users with the following:
Rosenberg added, “ For patients with PF, the future of health care is here, literally at their fingertips, with the Responsum for PF mobile app. For doctors with newly diagnosed patients, we are your partner in providing vetted information that patients can trust outside of the office. And for existing patients, no longer will they be forced to sift online through overwhelming amounts of inaccurate, outdated and overly scientific information.”
Facts about Pulmonary Fibrosis
Although still considered rare, more than 200,000 Americans are living with pulmonary fibrosis (PF). PF is a deadly and complex disease that causes progressive scarring of the lungs and breathing issues.
About Responsum Health
Responsum Health is a free, revolutionary patient engagement platform that monitors, searches and curates the Internet and then generates a personalized Newsfeed of article summaries vetted by Responsum’s partners at the Pulmonary Fibrosis Foundation (PFF). Responsum wraps the Newsfeed into a comprehensive platform that enables patients to comment on and rate the articles, as well as share with their professional care team and loved ones. Responsum also enables patients to better organize their health information, find local patient support groups and services, and use a legislative advocacy tool for policies that impact their health care.
Jenny Rosenberg, Public Relations Director
Responsum Health Tackling the Challenge of Building Information Hub for Patients with Uterine Fibroids
On August 13, Responsum Health announced its commitment to build a new patient platform for people with uterine fibroids, a devastating, but under-recognized chronic condition that affects the lives of millions of people in the United States and across the globe. In partnership with Duke University Clinical Research Institute and two leading fibroids advocacy organizations, CARE About Fibroids and The White Dress Project, we are aiming to provide individuals with a trusted resource of vetted information about treatment options, support resources, and lifestyle tips, much like we do today for the pulmonary fibrosis community.
Unlike pulmonary fibrosis, however, which is a semi-rare disease with approximately 130,000 diagnosed cases in the US, uterine fibroids impact the lives of tens of millions of Americans, often leading to infertility, emotional instability, and economic distress.
When we developed Responsum Health’s approach to informing, empowering, and building patient communities around their common chronic conditions, we wanted to develop an approach that could be of equal value to patients of rare, semi-rare, and more common illnesses. Uterine fibroids will put that hypothesis to the test.
We are particularly excited about tackling the challenge of building an information hub for patients with uterine fibroids because the need is so great. It is mind-blowing to think that there is such a vast lack of awareness around a health condition that impacts such a large number of people. What we do know is that uterine fibroids has a significant impact on a person’s quality of life including fear regarding relationships, sexual function, body image, loss of control, and hopelessness. What we still need to better understand is how patients perform under the various treatments that are currently available to them and this is where our partnership with Duke will come in. Through our Responsum platform, and with the participation of an engaged community of UF patients, we will have the ability to glean valuable insights into their lived experiences. With the information about their symptoms, rate of recurrence, and ability to conceive, we will assist the medical community with developing better treatment protocols and help researchers to better target their efforts. And all the while, we’ll be helping to inform, empower, and organize people with uterine fibroids so that they can be better advocates for their own health.
And that’s what we consider a real win-win for patients.
I hope you’ll continue to follow our progress on Responsum for UF and look forward to your support.
Founder and CEO
Responsum Health and Duke Clinical Research Institute Announce Collaboration to Create Online Information Platform and Community Hub for Uterine Fibroids Patients
FOR IMMEDIATE RELEASE:
August 13, 2019
Andy Rosenberg, Founder, Responsum Health
Washington, D.C., and Durham, N.C., August 13, 2019 – Responsum Health (Responsum), an innovative creator of personalized patient newsfeeds and support platforms, and the Duke Clinical Research Institute (DCRI), a leading academic research organization, are excited to announce an agreement to collaborate on their shared mission to improve the quality of life for patients with uterine fibroids. They are joined in this effort by The White Dress Project and CARE About Fibroids, two of the nation’s top uterine fibroids patient advocacy organizations. The announcement follows Fibroids Awareness Month, recognized in July.
Under the agreement, Responsum will commit to developing and promoting a unique, uterine fibroids patient-centered information portal, similar to its work in other therapeutic areas. This new platform will serve the dual goals of providing comprehensive, understandable, and trustworthy information while helping to connect a nationwide community of patients. The new web-based tool and app, Responsum for UF, will synchronize with the DCRI’s unique patient registry, COMPARE-UF (Comparing Options for Management: Patient-centered Results for Uterine Fibroids).
The COMPARE-UF registry is funded by the Agency for Healthcare Research and Quality (AHRQ), in collaboration with the Patient-Centered Outcomes Research Institute (PCORI). DCRI serves as the Data and Statistical Coordinating Center.
The registry has enrolled more than 3,000 women from nine medical centers. By sharing their experiences with uterine fibroids treatments, these women are helping doctors understand symptom relief patterns, impact on pregnancy, and the need for additional treatment. The goal of COMPARE-UF is to help patients and their doctors make informed decisions about treatment options.
COMPARE-UF will follow the patients in its registry, who are women between the ages of 18 and 54 who have been diagnosed with uterine fibroids and who are not in the transition to menopause.
"We are very excited to be working with Responsum, CARE About Fibroids, and The White Dress Project to develop innovative ways for women to share their experiences with uterine fibroids, as well as to get the best possible information about their choices for treatment," said Dr. Evan Myers, principal investigator of COMPARE-UF at DCRI.
“We look forward to collaborating with the Duke Clinical Research Institute to help collect valuable insights from women with uterine fibroids,” said Andrew Rosenberg, founder of Responsum Health. “By bringing the patient experience to bear through our partnerships with The White Dress Project and CARE About Fibroids, we will create an online tool, newsfeed, and support platform that fills a vital information gap while simultaneously convening an authentic, welcoming online community for women with uterine fibroids.”
“We are thrilled to partner with the Duke Clinical Research Institute and Responsum Health as we continue to fulfill our mission of heightening public awareness and creating a greater sense of urgency around the toll and challenge of uterine fibroids,” said Jenny Rosenberg, executive director of CARE About Fibroids. “Combined with The White Dress Project’s incredible patient advocate network, we look forward to bringing the strategic communications capabilities along with the scientific and policy expertise of CARE About Fibroids to join this extraordinary opportunity to provide women with a trustworthy, online information platform to replace Dr. Google.”
“The White Dress Project is committed to growing, educating, and enriching a community of women who feel confident knowing they no longer have to suffer in silence with uterine fibroids,” said Tanika Gray Valbrun, executive director of The White Dress Project. “Our partnership with the Duke Clinical Research Institute and Responsum Health is a groundbreaking way to make sure women are better informed and equipped to be their own best advocates.”
About Responsum Health
Responsum is a free, revolutionary patient engagement platform that monitors, searches, and curates the internet and then generates a personalized newsfeed of article summaries vetted by Responsum’s patient group partners. Responsum wraps the newsfeed into a comprehensive platform that enables patients to comment on and rate the articles, as well as share with their professional care team and loved ones. Responsum also enables patients to better organize their health information, find local patient support groups and services, and use a legislative advocacy tool for policies that impact their health care. For more information, visit responsum.com.
About the Duke Clinical Research Institute
The DCRI is the largest academic research organization in the world, with a mission to develop and share knowledge that improves the care of patients through innovative clinical research. The DCRI conducts groundbreaking multinational clinical trials, manages major national patient registries, and performs landmark outcomes research. DCRI research spans multiple disciplines, from pediatrics to geriatrics, primary care to subspecialty medicine, and genomics to proteomics. The DCRI also is home to the Duke Databank for Cardiovascular Diseases, the largest and oldest institutional cardiovascular database in the world, which continues to inform clinical decision-making 40 years after its founding.
About CARE About Fibroids
CARE About Fibroids is taking the lead in mobilizing women’s health advocacy and policy-focused organizations to build greater awareness of uterine fibroids, as well as a sense of urgency around the need for improved diagnosis, expanded and better treatment options, and enhanced patient access to appropriate care.
CARE About Fibroids is headquartered in Washington, D.C., under the direction of its executive director Jenny Rosenberg and a steering committee of leading independent nonprofits focused on women’s health. Currently, the steering committee is comprised of: the Black Women’s Health Imperative, COSHAR Healthy Communities Foundation, HealthyWomen, and To Know Is To Know. Additionally, general members of CARE About Fibroids include the American Sexual Health Association, the National Partnership for Women & Families, and The White Dress Project.
About The White Dress Project
The White Dress Project is one of the leading patient advocate organizations for women with fibroids. Our mission is to galvanize support globally, lead awareness efforts, and raise funding for uterine fibroids research and education. Even though more than 200,000 hysterectomies are performed each year for uterine fibroids and the annual direct health care costs in the U.S. exceeds $2.1 billion, very little is known about fibroids prevention or treatment. The White Dress Project aims to empower women to share their stories to collectively highlight the importance of this issue.
The White Dress Project, a 501(c)(3) founded by Tanika Gray Valbrun in 2014, is headquartered in Atlanta, Ga. Through the efforts of The White Dress Project, Georgia was the first state to declare July as Fibroid Awareness Month with the passing of House Resolution 1898. Through the efforts of The White Dress Project, resolutions have also been passed in New York, Florida, South Carolina, Pennsylvania, New Orleans, Washington D.C., California, and Maryland.
About Uterine Fibroids
Fibroids consist of lumps made of muscle cells and other tissues that grow in or around the wall of a woman’s uterus. These tumors can cause serious medical issues, including heavy menstrual bleeding, debilitating pelvic pain, urinary symptoms, and more. Fibroids account for one-third of all hysterectomies performed in the U.S. and disproportionately impact women of color.
 Stewart EA. Uterine Fibroids. New England Journal of Medicine. April 23, 2015. Available at: https://www.nejm.org/doi/full/10.1056/NEJMcp1411029
Commitment to collaborate aligns the efforts of one of the world’s largest patient-led PF support communities with the developers of Responsum for PF, a state-of-the-art information and patient engagement platform.
FOR IMMEDIATE RELEASE:
July 24, 2019
Washington, DC and Dallas, TX, July 20, 2019 – PF Warriors LLC, one of the world’s largest patient-led support communities of pulmonary fibrosis patients, and Responsum Health, the parent company of Responsum for PF, a personalized newsfeed and support platform, are excited to announce an agreement to collaborate on their shared mission to improve the lives and quality of life of people suffering from pulmonary fibrosis.
As part of the agreement, both organizations will create an unprecedented level of cooperation to support each other’s endeavors. The alliance will provide the at-large PF community with a comprehensive, trustworthy, and non-duplicative collection of support programs, tools, inspiration, and support. Among other efforts, the two organizations will actively cross-promote each other’s activities, content, and benefits of membership.
Although still considered rare, more than 200,000 Americans are living with pulmonary fibrosis, a deadly and complex disease which causes progressive scarring of the lungs and breathing issues. Approximately fifty thousand new cases are diagnosed each year. About forty thousand existing patients die annually. Two medications are now available to slow the progress of PF but there is no known cure. Research and additional clinical trials continue.
"PF Warriors LLC's mission can be summed up as 'patients helping patients.'
We hold monthly support group meetings in Dallas, Texas and offer virtual online sessions for our members across America and the world. Our collaboration with Responsum for PF will help us provide up-to-date knowledge and ideas to an even larger population of patients, caregivers, and families stricken by this terrible lung disease.
"Bill Vick, Founder and Managing Partner, PF Warriors LLCTM."
“We couldn’t be more excited at the prospect of collaborating with PF Warriors LLC and their indefatigable founder and leader, Bill Vick,” stated Andrew Rosenberg, Founder of Responsum Health. “By working together, we send a positive message to all PF patients that both of our organizations and their complementary programs and platforms can be trusted partners as they embark on a challenging new life journey coping with this difficult health condition.”
Launched earlier this year and already used by over 500 patients, Responsum for PF features a searchable database of over 700 article summaries, curated for the pulmonary fibrosis community. Responsum for PF also provides useful health data tools including a shareable Patient One-Sheet, information on patient support groups, as well as patient assistance program contact information. A mobile app is due out this August.
About Responsum Health
Responsum is a free, revolutionary patient engagement platform that monitors, searches and curates the Internet and then generates a personalized Newsfeed of article summaries vetted by Responsum’s partners at the Pulmonary Fibrosis Foundation (PFF). Responsum wraps the Newsfeed into a comprehensive platform that enables patients to comment on and rate the articles, as well as share with their professional care team and loved ones. Responsum also enables patients to better organize their health information, find local patient support groups and services, and use a legislative advocacy tool for policies that impact their health care. Responsum for PF will be releasing a new mobile app in August 2019. For more information, visit responsumforpf.com.
About PF Warriors
The PF Warriors LLCTM is a volunteer managed group of more than 1,400 Pulmonary Fibrosis patients, families and medical professionals helping each other live with PF.
We bring our patient members together for interactive discussions with some of the most qualified lung disease experts. We also use social media extensively to help members connect with and learn from each other within a safe, inspirational environment. PF Warriors prides itself on being the "voice of the patient.” For more information visit PFwarrior.com
Last month, we learned that Responsum was accepted into StartUp Health’s Moonshot Academy / incubator for digital health entrepreneurs. StartUp Health is tough to break into – they only take around 5% of the companies that apply. But once you’re in, StartUp helps small upstarts to grow into sustainable companies. And that’s important if we want to help the PF patients of tomorrow.
A big part of the reason we were accepted is that StartUp believed in our vision for using the Internet to educate, empower, and improve outcomes for PF patients. Another reason was the fact that more than 400 patients like you have already signed up and use it regularly.
As with everything we’re building, we couldn’t do it without you, our patient partners. THANK YOU!!!
Truly, we’re in this together.
Founder and CEO
As momentum continues to build following the launch of Responsum Health’s partnership with the Pulmonary Fibrosis Foundation (PFF), we are just now beginning to assess the impact of the announcement. So far, the press release has generated 103 total mentions with a total reach of over 44.7M (million) people. In just a short month, over 330 patients have signed up for Responsum accounts. The following list includes some of the publications that carried news of the announced collaboration.
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.