The Walking Gallery of Healthcare

The Walking Gallery is a walking wall of individuals who wear personal patient narrative paintings on their backs. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation. While creating national health policy medical professionals and government officials are often more reliant on aggregate data sets, bar charts, graphs and statistics, rather than the whole picture of care, the personal patient narrative and the individual human face.

The Walking Gallery movement hopes to diversify the source content that is used to create the foundation for patient centered care policy, by infusing art imagery depicting a unique patient history or personal story.

An artist or artists will interview medical professionals and lay individuals to form a patient centric narrative. The artist will then create representational imagery and paint that picture story upon the business jacket of the provider of the narrative account. The provider of the patient story aka “Walker” will wear the jacket to medical conferences and events in order to disseminate the patient story to a large group of policy minded attendees and to represent the individual patient [...] continue the story

Stories @CSI: Patient Commando is improving healthcare outcomes through patient narratives

By Lisa Ferguson, CSI Reporter

Actor Daniel Stolfi was undergoing chemotherapy treatment when he started writing a one-man comedy show about cancer. His friends and family thought he was crazy. No one was going to laugh at cancer, they told him.

While there’s nothing funny about cancer, Daniel’s story of his experience with it is. It’s also powerful and moving. By sharing what he went through—losing, at age 25, his hair, appetite, strength, sex drive, even his desire to dance—Daniel is helping healthcare professionals like those who watched him perform recently at Toronto’s Sunnybrook Hospital to view their patient as more than a symptom or a condition. Such understanding can improve doctor-patient relationships and, in turn, patient outcomes.

Performances like Daniel’s are part of the modus operandi of Patient Commando, a patient advocacy group founded in Toronto in 2010 by Executive Director Zal Press, who has his own story of battling illness.

Zal has lived with Crohn’s disease, a chronic inflammatory bowel illness, for over 30 years. For many of those years he was “the typically unengaged patient,” taking pills and doing what the doctor told him to. He was in and out of hospital, tried different types of treatments, and had surgery.

About eight [...] continue the story

Boys With Bigger Hearts

MPS II (Hunter Syndrome) is a rare degenerative disease.  Boys With Bigger Hearts is a documentary film dedicated to telling the stories of a few families and individuals affected by this devastating disease in a beautiful and honest way.

2000 people worldwide live with MPS II (or Hunter Syndrome). This film tells the raw and honest stories of four boys affected.

We launched a Kickstarter campaign to secure some short term funding to produce the full length documentary. This documentary has the potential to help increase MPS II awareness and support our end goal to find a cure for MPS II.

In the end we hope this film will help raise awareness and educate people about MPS II. By raising awareness we can support the cause to find a cure.

About the Storytelling Project

The Waiting Room Storytelling Project is a location-based social media and community engagement initiative that aims to improve the patient experience through the collection and sharing of digital content. This cultural data – video, data visualizations, photographs and text – is collected in the waiting room by creating frameworks for sharing that range from anonymous expressions of feeling to deeper storytelling.

The primary aim of the platform is to uncover the needs of underserved patients at a moment when the role of the “Safety Net” is being debated both in America and abroad. We also aim to develop tools for patients that allow them to take a more active role in their health care experience. To this end, we aim to expand and foster the organizational capacity for storytelling at Highland Hospital by creating a robust, scalable platform that can amplify the voices and needs of the most underserved communities in our country.

As America’s health care system sits poised to undergo its greatest transformation in generations, we will capture history unfolding and make sure that the story is told from the bottom up, not just the top down, using a unique combination of social media platforms and traditional documentary film. We [...] continue the story

Trailer: The Waiting Room

The Waiting Room is a character-driven documentary film that uses extraordinary access to go behind the doors of an American public hospital struggling to care for a community of largely uninsured patients. The film – using a blend of cinema verité and characters’ voiceover – offers a raw, intimate, and even uplifting look at how patients, staff and caregivers each cope with disease, bureaucracy and hard choices.

The ER waiting room serves as the grounding point for the film, capturing in vivid detail what it means for millions of Americans to live without health insurance. Young victims of gun violence take their turn alongside artists and small business owners who lack insurance. Steel workers, taxi cab drivers and international asylum seekers crowd the halls. The film weaves the stories of several patients – as well as the hospital staff charged with caring for them – as they cope with the complexity of the nation’s public health care system, while weathering the storm of a national recession.

The Waiting Room lays bare the struggle and determination of both a community and an institution coping with limited resources and no road map for navigating a health care landscape marked by historic economic and political dysfunction. It is a film about [...] continue the story