Posted on: April 26, 2016
Written by: Coalition for Compassionate Care of California
It has been said that patients are the most under-used resource in health care.
The Coalition for Compassionate Care of California believes patients offer valuable insights and experience and can serve as messengers and champions of the importance of advance care planning and palliative care.
For the first time, the Coalition for Compassionate Care of California is excited to welcome “e-patients” to participate as equal partners in our 8th Annual Summit on May 12-13, 2016, in Newport Beach, CA.
What is an e-Patient?
An e-patient is a health consumer who participates fully in their medical care. Sometimes referred to as an “internet patient,” e-patients see themselves as equal partners with their doctors in the healthcare process.
e-Patients could be the missing link in communication about advance care planning and palliative care, and could prove instrumental in helping change the way we talk about death and dying, not only among other e-patients but among the population in general.
Meet the 2016 Class of Palliative Care e-Patients
Elizabeth Bailey, MA, is a patient advocate and the author of The Patient’s Checklist: 10 Simple Checklists to Keep You Safe, Sane and Organized, which was endorsed by Dr. Atul Gawande and called “a godsend” by The New York Times. She is currently working on two projects: a documentary film exploring ways to demystify palliative care for the layperson and a book geared towards helping the sandwich generation of caregivers negotiate long-term, complex caregiving for parents and other family members and friends. Find Elizabeth on Twitter as @PatientPOV.
Cindy Chmielewski is a retired educator and myeloma survivor is using her passion for education to teach a new group of “students” – myeloma patients and their caregivers. Cynthia is on the advisory board of the Patient Empowerment Network and the Myeloma Crowd. She tweets @MyelomaTeacher and co-founded the #MMSM TweetChats. She administers the PMMNG and the MyelomaTeacher’s Resources Facebook pages. Cynthia is a panelist on CureTalks Myeloma Internet Radio and is on the University of Pennsylvania’s IRB. Find Cindy on Twitter as @MyelomaTeacher.
MarlaJan DeFusco is the creator and author of the Luck Fupus blog. She lives with lupus, congenital heart disease, several overlapping autoimmune diseases, is a cervical cancer survivor and breast cancer “previvor.” Her blog began as means to cope with living with chronic illnesses, and has become a platform for her to educate and advocate for patients across the globe. Find MarlaJan on Twitter as @marlajan.
Kathy Kastner‘s e-Patient journey was launched in a tweet-chat about hospice and palliative medicine (#hpm): health care professionals dedicated to a peaceful, dignified death lamented how little laypeople understood about life-prolonging interventions. As one such layperson – with a history of identifying gaps in patient education – Kathy’s blogging, researching and curating resulted in BestEndings.com – a consumer website dedicated to helping people navigate their medical decisions as life’s end nears. Find Kathy on Twitter as @KathyKastner.
Debra Zeldin, mom of three, has been a San Diego county foster parent since 1998. She is an advocate for the children in her care, and has seen first-hand the positive impact palliative care has made in the life of her now 11-year-old daughter, Anna. Debra has joined with the Children’s Hospice & Palliative Care Coalition to advocate for policy issues impacting children with serious illness in California.
Learn more about the e-patient movement at e-patients.net.
Coalition for Compassionate Care of California is an interdisciplinary collaborative of thought-leaders from healthcare systems and organizations, government agencies, consumer organizations, and the general public. Our goal is to transform healthcare so that medical care is aligned with individual patient preferences—that people get the care they need and no less, and the care they want and no more. We want to create a community where people have support to explore their wishes for care during a serious illness, express their wishes, and have these wishes honored.
CCCC commits to creating a welcoming and comfortable environment in which e-patients will receive the same level of respect and inclusion given to clinicians, researchers, policy makers and other Summit attendees.