Patient No More

We're overdue for true patient-doctor partnerships. Reporting from the 10th International Diagnostic Error in Medicine (DEM) conference.

Haven't we patients been patient long enough? It's been 21 years since the Institute of Medicine (IOM) called for a "sustained partnership" between clinicians and patients "predicated on the development of mutual trust, respect, and responsibility." And the medical community has responded...although in slow motion.

Despite their call for patients to be partners in their own health care, the IOM's 1996 report "Primary Care: America's Health in a New Era" still saw patients as junior partners to their primary care doctor, not equals. They limited the patient's "partnership" responsibility to sharing goals and methods.

Fast forward to today, at the Patient Summit, a full day event hosted by the Patient Engagement Committee of the Society to Improve Diagnosis in Medicine (SIDM). I'm proud to be a new member of that committee and admire the efforts and successes of the other members, like chair Helen Haskell, founder of Mothers Against Medical Error (MAME) and co-chair Peggy Zuckerman, a kidney cancer survivor and patient advocate.

Presenter after presenter shared powerful testimony about the positive –– and measurable –– impact on patient health when patients are truly empowered as full partners with the rest of the medical team. Perhaps the fact that approximately one-third of the attendees at this patient-centric event were doctors is a sign that we are truly entering a new era in patient-doctor relations. I certainly hope so, as did all of the presenters.

The Patient Summit covered so much ground, it's hard to share it all here. So here are a few of the highlights and some helpful information, with links if available:

Check out the Patient Toolkit created by SIDM and the Patient Engagement Committee members. Use it before you see your doctor for a problem or if you're feeling ill.
John Ely, MD, MPH, University of Iowa Healthcare [on video] spoke about the eight (8) most important questions all doctors are taught to ask. Patients with health concerns should come prepared with answers to all eight. Here is an article summarizing them.
Patricia Folcarelli, RN, MA, PhD is VP of Healthcare Quality at Boston's Beth Israel Deaconess Medical Center (BIDMC), spoke about the success of the Open Notes program. Now used by over 17 million patients, Open Notes is a program that helps healthcare organizations offer full transparency to patients. Visit notes are part of your medical record, written by doctors, nurses, therapists, or other health professionals to describe exams and interactions with patients. Over 80 top medical centers or healthcare provider networks work with Open Notes. Folcarelli also shared the results of two pilot studies conducted at BIDMC using Open Notes as a means to get patient feedback on the accuracy of the records with an eye to avoiding patient harm or diagnostic error due to inaccuracies. She told the attendees, "Documentation errors are safety concerns."
Alisa Khan, MD, MPH, is a hospitalist at Boston Children's Hospital (BCH) and an Instructor in Pediatrics at Harvard Medical School. She shared the results of several research projects which demonstrated the importance of fully engaging the families of patients in open discussions of their child's health and progress as well as in identifying safety issues in the hospital. If you wish to read the actual studies, you can see the list here. Google the ones you want to read.
Kelly Smith, PhD, is a project co-principal investigator at Medstar Health Research Institute. She shared the results of a study titled Improving Patient Safety in Primary Care Settings by Engaging Patients and Families. They identified four interventions which were proven to help improve patient safety. You can employ two of them right now: Be Prepared To Be Engaged which is a easy-to-use patient toolkit you can fill out before your next doctor's visit and Medication Management which is an easy way to ensure your combination of prescribed and over-the-counter medicines, as well as any supplements you take, aren't harming you.