Storify empowers patients with Long Covid by inviting them to share experiences, advocate for their needs, and address their healthcare challenges. It promotes innovation, raises awareness, and advocates for patient involvement in healthcare decisions.

Project Case Study

Storify is an innovative concept uniting patients, providers, and researchers to tackle the challenges of Long Covid. Through storytelling and data-sharing, Storify drives innovation, fosters understanding, and amplifies voices in healthcare.

Four years ago, in the spring of 2020, patients coined the term 'long COVID' to describe a form of viral infection from which recovery seemed impossible. They united to understand the condition, its symptoms, challenges, and potential solutions, as they often found themselves isolated in their struggles. Through social media, they shared their healthcare journeys, revealing patterns that demanded attention and change, and even offered solutions.

Unfortunately, the healthcare system operates in silos, hindering the voices of those most impacted from reaching researchers, healthcare providers, and policymakers. Long COVID compelled researchers and providers to engage more deeply than before, as they read lived experience stories online, recognized, learned, and unlearned together. 

These narratives helped researchers refine their questions and informed providers that the condition was real and not merely psychological.

As design researchers, we always prioritize placing those most impacted by a design at the forefront. We explored how to center individuals living with long COVID, their caregivers, healthcare providers, and researchers, fostering collaboration among them. The healthcare system is immensely complex, and meaningful progress cannot be achieved without these stakeholders connecting, sharing, and learning from each other.

Storify is a safe platform for sharing stories, journeys, needs, solutions, and ideas, where those most impacted by the healthcare system are connected directly or indirectly, considering their busy schedules and sensitive situations. Based on two years of research with people living with Long Covid, healthcare providers, and researchers, Storify aims to address issues hindering collaboration among these three sectors and encourages their active involvement. Storify fosters partnerships instead of viewing patients as mere participants or end-users and values lived experience as a form of expertise.

Storify not only offers a fresh perspective on the current system but also introduces another, much needed, data source to complement evidence-focused research in healthcare. Additionally, as the description of health has evolved, it is no longer merely conceived as the absence of disease, but rather as a holistic consideration of one's well-being. This shift dramatically changes how professionals, patients, and the public engage with the topic of health (Huber et al., 2011). Now more than ever, we need to explore alternative research approaches, and Storify does this by examining care through an exploratory design research lens in combination with evidence-based research. As we witnessed, the absence of relevant evidence-based knowledge led to people living with Long Covid being overlooked and undervalued.

Storify aims to prevent over-researching certain topics and focuses on addressing the right questions at the right time.

The concept took shape as we delved into the stories and data shared on social media platforms, identifying improvement potentials, barriers, and data security concerns. Following an in-depth secondary research on healthcare systems and the value of patient-provider participation in healthcare, interactive interviews were conducted with providers, people living with Long Covid, and researchers. The result of data analysis led to the development of Storify. The project is currently in the feedback phase, with the next step being the redesign of features in collaboration with individuals with lived experiences.

The platform has been designed with the people who have lived experience and not simply for them. This collaborative approach ensures that their needs and dreams are addressed and they are empowered to take action.

Storify addresses the innovation ecosystem opportunity highlighted in a Long Covid report. It creates a platform for individuals living with a condition to advocate for their needs and fosters a space for partnership with researchers and providers. This enables meaningful and impactful research to be conducted and facilitates timely action, potentially leading to rapid innovation and breakthroughs.

In the journey to address the complexities of Long Covid, Storify emerges as more than just a platform—; it is a catalyst for collaboration, innovation, and empowerment. By amplifying the voices of those affected, breaking down silos between patients, providers, and researchers, and fostering meaningful partnerships, Storify paves the way for impactful change. It's not merely about sharing stories; it's about transforming experiences into action, driving forward a future where every voice is heard, every need is valued, and every step brings us closer to a healthier future.

This post was edited on Sep 19, 2024 by Health+ Long COVID