Since June 28, 2021, the international digital fitness platform GetphY has been offering “IPF & Me” – an individual training program developed by the Siel Bleu organization specifically for people with idiopathic pulmonary fibrosis and now benefiting affected people around the world. Key supporters of the entire development process were the Boehringer Ingelheim company and Ashoka Foundation, which launched the joint health initiative “Making More Health” eleven years ago. With IPF & Me, those involved have put together a tool in around five years of development that is unparalleled in terms of its global reach and benefits for patients. As a result, it serves as a pioneer for other global health initiatives. Below, we look at how it came about.

PHYSICAL ACTIVITY – URGENT IN AGING SOCIETIES

As the Greek philosopher Plato once decreed, physical exercise was intended to shape, harmonize, and train the human body and soul to produce fully fledged citizens. Over the millennia, however, sports have been pushed further and further into the background in our highly developed societies. This is because although we have reached a maximum level of comfort, we have forgotten that exercise and well-being belong together, particularly among those who are ill or simply old. Siel Bleu Foundation was founded in 1997 to remind people of this fact.

The organization was initially established in France in 1997 by two sports science students who wanted to utilize adapted exercise programs to fulfill the unmet need for preventative exercises for older adults and improve their quality of life. With over 22 years of experience delivering these programs to older adults, the Siel Bleu Foundation now comprises 700+ physical trainers delivering 360,000 physical activity sessions to older people in France, Belgium, Spain, and Italy. Siel Bleu has been working with physicians, clinics, and medical associations for years to help people in their communities achieve the best possible personal independence.

Siel Bleu had already developed and successfully established an exercise program for people with idiopathic pulmonary fibrosis (IPF) – with over 120,000 participants in four countries – when the Ashoka Foundation proposed to the organization to take its program even further. More importantly, by becoming a fellow of the Making More Health project it could get its program out to patients around the world more effectively.

A DIGITAL PLATFORM AS A GATHERING POINT FOR THE IPF COMMUNITY

Guillaume Lefevre, CEO of Siel Bleu Spain and Managing Director of Siel Bleu Europe, presented the project at the Making More Health Convention in 2017. Also in the audience was Sylvie Branche-Letinois, who, as Head of Global Marketing Pulmonary Fibrosis Portfolio, was already well acquainted with the disease and its challenges, and felt a strong desire to make an even more significant difference in this area. Without further ado, she met Guillaume Lefevre for lunch, where they agreed to work together in the future.

“We had no idea what we were getting into because we had no experience of working with a large company. But from the beginning, we were carried forward by the shared vision that we wanted to help more people with IPF,” Guillaume Lefevre recalls. “Previously, our programs consisted of physical events to which people with the disease traveled, sometimes from 150 kilometers away. We wanted to bring our program to the people – and adapt it to their needs as much as possible.

Idiopathic pulmonary fibrosis (IPF) is a disease involving a steady decline in lung function. As a result, sufferers find it increasingly difficult to breathe and automatically limit their movements, which further restricts their oxygen supply. Physical activity can counteract many symptoms, strengthen the body, maintain mobility, and, last but not least, counteract potential mental dejection. “Patients with IPF struggle with their breathing. They are convinced they cannot move and are suffocating,” explains Guillaume Lefevre. “At first, they find these exercises very strenuous. But Once they start moving, endorphins are released, and they feel better immediately. Activity is also simply great fun.”

With IPF & Me, Siel Bleu and MMH are now transferring the IPF program into the digital sphere. Patients can quickly register on the platform; by completing a short initial questionnaire, they determine their physical fitness profile themselves and then receive an exercise program tailored to them personally. They complete daily exercises for 18 weeks (divided into three blocks of six weeks each). The platform also offers further tips (e.g. nutrition) and enables contact with other sufferers of IPF. What is particularly important is that patients download a regular report to discuss with their doctor. This contributes to a more self-confident approach to the disease and thus to empowerment vis-à-vis the medical establishment.

A PATIENT-FOCUSED APPROACH – APPLIED GLOBALLY

“I was absolutely blown away by the patient-focused approach of Siel Bleu,” emphasizes Sylvie Branche-Letinois. "Until then, I had not come across any initiative whose philosophy matched BI's so well and complemented our therapeutic approaches perfectly. Because I work in a global context, it was clear to me from the start that we had to give the project a global spin, too.”

This is why IPF & Me is now being rolled out step by step in other countries. The program is currently available in English, Spanish, Portuguese, Italian, German, and Dutch; other translations are planned. Many countries have already expressed their interest and asked for the program to be adapted to their individual needs. This will now be implemented step by step by the MMH team. To make sure many people can use the program, it must first be made known to doctors, hospitals, and other health personnel. Over time an entire range of helpful communication tools has also been developed – short films for social media, flyers, and webinars for direct exchange with doctors – which can also be used and disseminated easily in each country.

KEY LESSONS LEARNED AND OUTLOOK FOR THE FUTURE

What advice do Lefevre and Branche-Letinois now have for other people at MMH, Boehringer Ingelheim, and the international social entrepreneur scene if they also want to become active? "Don't let yourselves be sidetracked. We heard a thousand reasons throughout the project why it could possibly go wrong,” the two reveal with a laugh. “We are more than proud of ourselves, and we believe that working together and bringing together different perspectives and expertise can create tremendous momentum. We now want to extend this knowledge and experience to other disease areas, such as cancer or diabetes. Other ideas already exist – like involving pets in the daily exercise program.”