Patient advocates and medical, legal, ethics and policy professionals will come to campus this summer for the 2014 Summer Institute for Informed Patient Choice, discussing the implications of informed consent and patient choice, as well as improvements in health care transparency and patient-based care.
Conference participants will discuss how to ensure that “true shared-decision making” occurs between doctors and patients, said conference manager Arianna Blaine, who will help manage the summer institute.
Organizers will try to include patient voices at the conference this year, Blaine said. Three patient advocates will speak, including Dave deBronkart, or “e-Patient Dave,” an activist for participatory medicine and a spokesperson for the e-patient movement that encourages patients to take a more active role in health care decisions.
DeBronkart, who has given a TED talk called “Let Patients Help” and spoken at the Health Information Management Systems Society conference on health care technology, said the summer event is his first that “comes face-to-face with the real problem, which is that it’s just plain unethical to not tell people what their choices are.”
A co-founder and co-chair of the Society for Participatory Medicine, deBronkart said he began to understand the importance of informed consent after he was diagnosed with stage IV kidney cancer in 2007 and faced a prognosis of 24 weeks. He survived after receiving laparoscopic surgery and participating in a clinical trial, which he said many patients never hear about.
“I survived because I had the option,” he said. “I assert that the only ethical way to practice medicine is to give a desperately sick person as many options as you can to save their lives.”
DeBronkart said his remarks will revolve around the slogan from his TED talk, and cited a 2001 study by the Institute of Medicine study, which found that knowledge from clinical trials takes an average of 17 years to be implemented.
Blaine said she expects approximately 150 people at the conference, which will also feature relevant Dartmouth speakers.
Dale Vidal, medical director of the Center for Shared Decision Making at Dartmouth-Hitchcock Medical Center, said she will share Dartmouth’s strong legacy of patient-based care in her presentation.
Vidal said she hopes that both the ethical and legal imperatives of informed consent will be clear to participants.
Each day will address a distinct topic and will include interactive sessions and discussions. On June 25, participants will discuss the consequences of keeping patients in the dark. The second day’s discussions will focus on recognizing the full extent of the current problem. The last day will consider solutions at both the patient and systemic level.
The Dartmouth Institute’s summer conference began in 2007 and convened yearly with a group of invited individuals through 2012, Blaine said. This year’s summer institute, convening after a one-year hiatus, will become more interdisciplinary and open, transitioning from an invitation-only, week-long format to a three-day session with open registration with a fee of $395.
The institute will likely transition to a biennial format, Blaine said, and TDI has begun to think about its 2016 session, when it hopes to discuss the ethics of informed consent and shared decision making on broader organizational and executive levels.
This year’s conference, “The Legal and Ethical Implications of Keeping Patients in the Dark,” is co-sponsored by the Dartmouth Center for Health Care Delivery Science, the Informed Medical Decisions Foundation, the British Medical Journal and the American Society of Law, Medicine and Ethics.
