9:00 - 9:40 amSunday, September 29
Plenary Hall
Closing perception gaps between patients and their caregivers
Plenary Hall
Closing perception gaps between patients and their caregivers
Founder, HelpkeepaSisterAlive
Associate Professor, Baylor College of Medicine
Attorney
CEO, Inspire
This session will examine the perception gap between patients and their spouses about severity of disease and suffering, with insights from a cancer patient, Maggie Heim, and her husband, Paul Hoffman.... Read more

Description

This session will examine the perception gap between patients and their spouses about severity of disease and suffering, with insights from a cancer patient, Maggie Heim, and her husband, Paul Hoffman. Healthcare professionals need to be more attuned to the potential for a communications disconnect between a patient and his/her caregiver, which could lead to inadequate treatment. We will discuss a study that Inspire conducted last year in collaboration with Novartis, illustrating this gap: Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials.

Maggie Heim is the founder of HelpkeepaSisterAlive, an online information portal at www.helpkeepasisteralive.com for ovarian cancer and other cancer patients and caretakers.  HelpkeepaSisterAlive grew out of Maggie’s advocacy regarding drug shortages in 2011 and 2012. She has been living with ovarian cancer since December 2009 and breast cancer since April 2013. Maggie works full time as a senior vice president in the legal department for a motion picture studio in Los Angeles.  She is married to Paul Hoffman with whom she has two children and two grandchildren.

Aanand D. Naik, MD is a medical geriatrician and associate professor of Medicine and Health Policy at the Houston Center for Innovations in Quality, Effectiveness, and Safety (IQuESt) at the Michael E. DeBakey Veterans Affairs Medical Center and Baylor College of Medicine. Dr. Naik’s research focuses on the conceptualization of Patient-Centeredness as a distinct dimension of health care quality and the relationship between Patient-Centeredness and health outcomes in older, chronically ill adults. He has published over 75 peer-reviewed manuscripts and his independent research program is supported by federal funding and foundations such as the John A. Hartford Foundation, which supports his participation in the 2013 Stanford Medicine X program.

Paul Hoffman is a civil and  international human rights attorney. He is a partner in the Venice-based law firm of Schonbron DeSimone, Seplow, Harris, Hoffman & Harrison. http://www.losangelesemploymentlawyer.com/Attorneys/Paul-L-Hoffman.shtml.   He was the Chair of the International Executive Committee of Amnesty International, former legal director of the ACLU of Southern California and has been an adjunct professor at numerous law schools for over 30 years.  He is also a cancer survivor.  He is married to Maggie Heim with whom he has two children and two grandchildren.

Brian Loew created Inspire with the goal of improving patient engagement through the creation of a trusted, health-focused social network. Today, Inspire's 85 health association partners and over 360,000 members provide fertile ground for medical research, patient insight and health advocacy.

Brian believes that patient contributions to medical progress have been historically undervalued, and great progress may result from fully valuing contributions to medical research derived from the active involvement of patients.

 

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