Patients made visible: Q & A with creative director Annie Levy

The Arnold P. Gold Foundation provided funding to support “Ask Me a Question”, a project of Creative Director Annie Levy of the MADE VISIBLE Foundation.  This video project tells the stories of five different people who were/are patients. The videos are designed to be an interactive teaching tool to allow students and physicians to learn firsthand about the patient’s experience of illness through the patient’s own words and images.  Below, Ms. Levy answers questions in an interview with Gold Foundation blog editor Perry Dinardo.

Anna: Music photographer diagnosed with multiple sclerosis at age 23

See other videos from the Ask Me a Question project:

  • Amy: Mother, artist, and adventurer diagnosed with inflammatory breast cancer
  • Daniel: Drummer, Mets fan, and video game enthusiast diagnosed at age 4 with ALL Leukemia
  • Matthew: Musician, husband, father, and activist diagnosed 19 years ago with terminal brain cancer
  • Peter: Runner, golfer, husband, and father diagnosed at age 20 with osteosarcoma

Q: What was your inspiration for the Ask Me a Question project?

A: The amazing power of the personal story, and specifically its power to transform both the teller and the listener. I started my career as a writer/photographer and my work has always focused on the power of portraits. In establishing the Made Visible Foundation, the work has expanded to bring portraits to life, as it were, in different ways – through myriad projects, exhibits and live events.  A signature quality of our work is to not only find the best way to tell a particular story – be that through word, image, video, or live event – but to also build a bridge to an audience to create a connection that might otherwise not exist.

The specific inspiration for our work in the world of medicine and the videos you see here grew out of a project that was designed to develop a creative way for young people with life threatening illnesses to give expression to their experiences in words and pictures. Those young people at Montefiore Children’s Hospital entitled their project “Not Defined By Diagnosis” and that has become a theme of much of our work.

Working with the Arnold P. Gold Foundation has been amazing in that it has provided a way to bring the stories to a host of different audiences and to support the work of person-centered care and humanism in medicine.

Q: What is your vision for these videos and this project overall? What would you like viewers, whether health care providers or not, to take away from the videos?

A: The vision for the work is to allow both health care providers and others to, in some way, locate themselves in the story and see if they can identify with the different characters, so to speak. What would they do if faced with each situation?  How would they respond? Is there something specific that resonates with them/inspires them to do more of what they are doing or to make changes in their practice?

Dr. Adrienne Boissy, MD, MA, Chief Experience Officer, Cleveland Clinic has written an incredibly compelling article to accompany this project. Thanks to the amazing MedPage Today team, specifically Elbert Chu, Staff Writer and Ivan Oransky, MD, Vice President and Global Editorial Director, Dr. Boissy’s article and this project will be included in their Daily Headlines newsletter that goes out to some 400k physicians and healthcare providers. This collaboration helps deliver the patient voice message directly to the healthcare providers who can transform everyday clinical care.

Q: How did you find the people featured in these videos? What questions did you ask them? Were people generally eager to tell their stories?

A: We wanted to identify people who each had different types of stories and issues when they came to intersect with the world of medicine. We reached out to different groups, such as ArtWorks, when we were looking for young people and also to people we were aware of through our other projects. We asked our subjects first about who they are as people, being mindful of the William Osler “frame” of the great physician treating not the disease but the person who has the disease. We then went on to ask them about their experiences – what mattered to them when faced with a diagnosis and how that was received and responded to in the world of medicine.

We find that people are extremely eager to tell their stories. In part we call the work “Made Visible” because of our experience of people telling us that being seen and known by others has its own type of healing quality. We called this project “Ask Me A Question” as both a reflection of that and of the connection that happens when you are curious about another person.

Q: Did you consider talking to other family members? 

A:  Indeed.  We plan to expand the scope of the work to include family members and their perspectives. In addition, because there are so many stories of amazing interactions with different physicians we are ultimately planning to create a project that would present the same story from each person’s unique perspective.  This would include patient, family member, physician, other healthcare professionals – an interdisciplinary approach, so to speak, to allow the viewpoint of each to literally and figuratively be “made visible”.

About The Made Visible Foundation:

The MADE VISIBLE Foundation’s work in the world of medicine grew out of a project that was designed to develop a creative way for the patient voice to find expression. What began as work that was of great value to the individual grew into something that in addition when seen, heard and experienced by others, became an engaging and powerful way to create connections and build bridges between patients, practitioners and the larger world.

Annie Levy and her team use their skills to create projects, exhibits and live events that harness the power of the personal story to educate, inspire and transform experience. All centering around patient as person MADE VISIBLE.

MADE VISIBLE lives and works in the zone where people find creative ways to tell their stories, and in doing so, emerge from isolation, teach us important things about life and identity, and even touch things struggling for expression in all of us. We bring these stories to life.  You can follow the MADE VISIBLE Foundation on Twitter at @MadeVisibleFdn.

Perry-Dinardo-150x150Perry Dinardo is a 2014 graduate of Duke University, an employee at Children’s Hospital Boston and a Research Intern at the Arnold P. Gold Foundation Research Institute.  She plans to attend medical school in the future and is excited to contribute to the Gold Foundation’s work.