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.
PF patients want Responsum and the useful, summarized, and reliable information that it delivers.
Further, they are excited at the promise of Responsum as an effective shared decision making tool by which to drive meaningful conversations – both electronically and in person – with their health care providers around treatment options, lifestyle concerns, and defining value.
The results, which follow below, have led our technical design team to make some important improvements to the platform – “de-cluttering” some features and improving others. These refinements will be ready by our public launch … and will make Responsum even better than imagined.
Summer 2018 Pilot strategy
In June 2018, Responsum conducted a multi-part series of tests in order to ascertain strengths and weaknesses prior to public launch of the platform to the public at-large. The Summer Pilot consisted of 4 different stages:
Follow-up phone interviews and informal feedback: 4 participants talked to our team on the telephone about their experience using Responsum. About 4 more emailed feedback intermittently in their first week of access to Responsum, and after the 7-day follow up survey.
What did patients tell us?
Initial interest in the June 2018 Summer Pilot (Pilot) was very high. Within a few days, 92 individuals pre-registered, indicating interest in participating. The implications of this should not be understated: these numbers indicate there is strong interest in a web-based patient resource for PF.
In the baseline survey, we found that this group of participants is an informed and connected group of patients that use the Internet to learn about their disease. Most of them feel they make informed decisions and can properly evaluate the information they find on the Internet as it relates to PF. Only a few participants indicated lack of skills, knowledge, confidence, and savvy in using the Internet to find, evaluate, and use PF-related resources.
Most participants expressed they feel emotionally overwhelmed by all the information they need to process and keep track of. About 50% of the participants say they trust the advice, opinions, or recommendations from other PF patients, and that it matters to them to stay connected with other patients.
In the 7-day follow-up survey and in the phone interviews, the feedback on the Responsum platform was positive. About 75% of the participants rated Responsum as “Extremely easy” or “Pretty easy” to use. 70% said it is “Extremely” or “Pretty” helpful and the same amount said they would recommend it to others with PF.
The Newsfeed was the most well-received feature of Responsum by participants. About 80% of participants rated it as “Extremely” or “Very” useful and about 90% considered it “Extremely” or “Very” trustworthy, and the article summaries provided were “Extremely” or “Very” easy to understand.
Participants were comparatively ambivalent about the other sections of the Responsum site. My Profile and My Care sections were rated by 50% of the participants as “Somewhat” or “Rarely” valuable. And the Patient One-Sheet and Community sections were rated as “Very” or “Somewhat” valuable by 70% of the participants.
Other features like Popups and alerts in the Newsfeed were rated as “Entertaining”, “Informative” or “Helpful” by most of the participants. Half of the participants said they did not pay attention to the Responsum Levels feature (Gamification), and overall the site onboarding and UI/UX (user interface design) needed to be more accessible.
What did we learn and what changes are we making for November’s launch to the general public?
Responsum appeals to patients across the full diagnosis lifespan. Users early in their disease journey benefit from curated information in easy-to-digest, plain language summaries, obtain access to different resources, as well as the opportunity to connect with other patients experienced in living with PF. Veteran PF patients appreciate a “one-stop-shop” resource to stay current on research, clinical trials opportunities, and a place to give and get social support for living with PF.
Our research shows that even highly knowledgeable, confident, and well-resourced patients living with PF can feel emotionally overwhelmed by all the information they need to process and keep organized, and that much of the information available on the Internet is not trustworthy. Responsum satisfies these core patient needs, goals, and values by reinforcing and improving the value that the curated and personalized content of the Newsfeed and the easy to use structure of the Patient One-Sheet can offer. We continue to improve these features by constantly reviewing articles content and by improving our software systems and algorithms so that patients have a more personalized experience more adequate to their individual needs.
In response to pilot feedback our team has decided to take the following actions:
Our team is also re-designing some areas in the “Care” and “Community” sections, so that users have a “cleaner” access to their Patient One-Sheet, and different resources like the clinical trials finder, financial assistance, access to advocacy initiatives, and to the support groups and PFF Care Center Network sites that our partners at the Pulmonary Fibrosis Foundation offer. This improved design also includes a smarter design of Responsum’s mobile application in response to direct feedback we received during the pilot trial.
As Responsum looks to its November 2018 launch, we are confident that we have invested more time with patients in devising, designing and re-engineering the platform to guarantee a high likelihood of success in attracting, retaining and providing real value to patients through 2018, 2019 and beyond. We are excited for the promise of Responsum as an effective shared decision making tool by which better informed patients begin to drive meaningful conversations – both electronically and in person – with their health care providers around treatment options, lifestyle concerns, and defining value to the patient.
Together, we can revolutionize patient engagement and drive the benefits of greater patient activation and patient/provider communication.
We hope you will join us on this journey.
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