Regina Holliday’s husband Fred died of kidney cancer on June 17, 2009. His untimely death was a tragedy, but it served to reveal a gap in today’s healthcare landscape: patients’ access to their own medical data.
Telling her story, Regina recounts a lack of communication from Fred’s doctors and significant roadblocks to crucial information about both his history and the state of the cancer. Not long after his diagnosis, Regina lost her husband. But in that, she embraced a mission – and started a movement.
“The Walking Gallery” is a big part of that movement. It refers to striking, full-color mural scenes Regina has depicted in acrylic paint on the backs of suit jackets and lab-coats. The painted garments tell myriad stories: from patients’ struggles to health care enigmas, to reform ideas for national and global issues. They are worn to conferences and events by a variety of patients, health advocates and friends of the movement.
Regina’s message is that without patients’ unique stories and perspectives, information that the public receives about disease, treatment options, and the whole of patient care is incomplete. Regina has said that the jackets and coats give patients a voice at medical conferences and other venues where they wouldn’t otherwise speak or be heard. On her blog, she shares examples of medical industry professionals wearing the paintings taking time to share and answer questions about the stories they wear on their backs.
At Lilly COI, we appreciate the art and compassion of The Walking Gallery. Patients need to heard in all areas of healthcare, including clinical drug development. We believe that the patient’s ability to collect, generate and share open information related to clinical trials will be pivotal to developing new treatments that better meet patient needs – safely, faster and at lower cost.
- Portable Legal Consent weconsent.us empowers patients to control their data and their contribution to research
- Our Clinical Collections tool brings clinicialtrials.gov registry information to patients in new, useful ways
- New ways to follow clinical research will help alert patients to new clinical information on the patients’ terms
This Friday (9/21) through Sunday, Gary Takher, Dean Sellis and myself will be attending the Partnership with Patients Summit in Kansas City – coordinated by Regina Holliday. Patients, providers and health professionals will gather to discuss Health Information Technology, Patient Safety and Quality, and Media and the Message of Patient Advocacy. We will be there to experience the Walking Gallery, to gain perspectives from Regina and other presenters, and to learn more about how we can help bring the patient voice into clinical drug development. We look forward to meeting you there.