August 30, 2016
By Judith Garber
In anticipation of Right Care Action Week October 16-22, we’re bringing you examples of activities that members of the Right Care community are planning. Right Care Action Week is an initiative where clinicians, patients, and others come together during the week to show what health care can and should look like. This year’s theme for Right Care Action Week is Listening. Learn more about Right Care Action Week, and get involved here!
Melissa Adams VanHouten of Indianapolis is acutely aware of the problems within our health care system. As a patient and online support group administrator for chronic illness, VanHouten interacts with doctors on a regular basis, and hears numerous stories from community members about their experiences in the health care system. For their second year participating in Right Care Action Week, VanHouten’s online group, Gastroparesis: Fighting for Change (GFC), will be hosting a Story Slam and Photo Blitz on their Facebook page. People will post stories and photos throughout the week about their experiences with the health care system, including times they received “right care” and times their care could have been improved.
In 2014, VanHouten was diagnosed with gastroparesis, a rare chronic illness in which the stomach cannot easily move food into the small intestine, preventing normal digestion. People with gastroparesis experience constant nausea, vomiting, and stomach pain, making it difficult to work or even leave the house. Many of the people on GFC are homebound, says VanHouten. Having an online event gives GFC members a chance to participate in Right Care Action Week.
And members of the GFC community have a lot of valuable stories to share because they regularly engage with the health care system. Patients are “in and out of the emergency room frequently,” said VanHouten. Gastroparesis is also rare, so there are fewer doctors that are very skilled in treating it, making it difficult for all patients to get proper care.
VanHouten hopes the RCAW event will be beneficial for both patients and practitioners. “It helps patients to know that others are willing to listen to their stories,” says VanHouten. By listening to patients, physicians can find ways to make patient health care experiences better. And the event will also help build community among patients with gastroparesis and their advocates, which is essential for improving the patient experience.