Mastodon We Are All Ears...Tell Us Your Story ~ Pallimed

Wednesday, October 21, 2015

We Are All Ears...Tell Us Your Story

by Ankur Bharija

“I wish I had met someone who had gone through the same issues as mine to tell me it was all worth it and it was going to be alright!” said a friend as he recalled himself contemplating undergoing his 5th round of chemotherapy for a type of brain tumor many years ago. Now a cancer survivor of many years, he wants to help others who are walking the uncertain road he once did.

What if he was heard well at that time and today? What if there was someone to listen? What if the healthcare delivery systems were developed with these needs in mind? What if as a community we were better prepared to take care of the most vulnerable?

Palliative Care (for first-time Pallimed readers) strives to improve QOL and alleviate suffering of those patients and families affected with serious life-limiting illness ( for example cancer, dementia, advanced brain, heart, lung, liver, kidney disease to name a few). It is best added early in the course of a serious illness as an extra layer of support to address not only physical, but psycho-social and existential suffering as well. Patient and family values and goals are at the very center of all Palliative Care interventions.

At the recent #PallOnc symposium where providers from Palliative Care and Cancer Care met, generated a lot of valuable information; most notable of which were the insights from patient representation at multiple sessions. The health care systems strive to educate the public on various health matters but seldom do we see such an enlightening insights and feedback from patients.

Recent ventures like Weal Life and Can Surround are refreshing attempts at trying the bridge the gap in the community for this vulnerable population.

It is clear much needs to be learnt from the past or present experiences of those “who matter most” - the patients and families (our ‘users’) as they try ‘living well’ through the uncertainties and burdens of serious illness. Whether it’s about survivorship or fighting active disease or those navigating the last chapters of life due to advance age or illness.

It almost seems like for the patients and families to be empowered, the community-at-large around them needs be enlightened with what matters most to them. This may help the healthcare community, entrepreneurs, patient advocates, volunteers to come up with innovative solutions that are at the right intersection of 'hi-tech and hi-touch’.

Calling upon not only the healthcare providers but patients, survivors, caregivers, patient advocates, volunteers, social entrepreneurs, digital health innovators, to join the #HPM community as we hope to create a more enlightened community in taking care of those with serious illnesses.

Join the conversation here via Blog Comments or join us for #hpm tweet chat tomorrow - Wednesday, Oct 21st at 6p PDT.

Tweet chat Topic: Hearing out those “Who Matter Most” - affected with serious life-limiting illness.

Who should attend: Communities at the intersection of #epatient #s4pm #MedX #DigitalHealth, #HealthIT, #MedEd, #Geriatrics, #Cancer, #HCLDR.

Questions we will explore: What are some of the common "non-medical challenges" faced by those affected with serious illness? These may be things you overcame as a family but wished there were better solutions. Example - sitter for a family member, uncertainty about the future, searching for a peer-peer support community, assistance with mobility with disability etc.

What are some of the avenues out there that have helped you or others, in managing the burden of serious illness? (services or products - Apps, websites, local services etc). Example - Support communities like American Cancer Society, American Heart Association; or some early-stage ventures like HealthTap, Weal Life and Can Surround.

What are some of the most pressing gaps not covered by the traditional HC system and existing support communities, that require urgent innovation? What would you envision as an ideal platform for support, personalized solutions and answers? (aka Digital Health or non-tech solutions for the Palliative Care population that are patient-centric and improve QOL)

Dr. Bharija is a Geriatrician and Palliative Care physician, currently works at Stanford Health Care and is faculty at Stanford University School of Medicine. He enjoys cooking indian food, running and travelling with his wife. You can find him on Twitter - @DrAnkurB.

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