cancer

social media for healthcare

The Walking Gallery – Personalizing Patient Stories

January 29, 2015 Janet Kennedy Get Social Health, Podcast 00:24:42 2 Comments

Regina Holiday faced a medical crisis – her husband Frederick’s cancer diagnosis – and found that the patient’s experience, input or feedback had no place in the healthcare system. After the death of her husband, Regina resolved to speak out about patient advocacy the best way she knew how; with her art. She painted a mural on a gas station in Washington, D.C. illustrating her husband’s health journey titled “73 Cents” (the cost per page of obtaining your medical health records in the state of Maryland). Regina founded  a patient advocacy movement, “The Walking Gallery” for which medical providers and advocates wear “patient story” paintings on the backs of business suits. The Walking Gallery appears at medical conferences, healthcare institutions and health events to draw attention to the need for patient voices to be a part of healthcare processes and systems.

To hear more about Regina’s story listen to the podcast or drop in at the time stamps below:

The Walking Gallery00:00 Introduction
00:45 Meet Regina Holliday, patient rights advocate
01:20 Regina’s story
02:50 Can art impact healthcare reform?
03:30 Finding ePatients online
04:27 Creating a 17′ x 70′ mural
06:50 A BP Believer
07:40 “I did not fit in” The start of The Walking Gallery
09:00 Kaiser Permanente display
10:00 How long does it take to create a Jacket
13:18 Accolades and calling out healthcare
14:20 Art can start a movement
15:50 ePatient Dave, Dave deBronkart
16:29 Meaningful Use, Stage 2 – the disconnect
The Walking Gallery17:21 Open Notes – and adding to a patient’s records
20:30 Part of the solution
22:02 Giving into the lack of change
22:35 Mental locks to change
23:20 Regina Holliday – everywhere
23:44 Social Media Tip: Lisa Ramshaw: “Think big”

Visit our resources page for more valuable (and free!) resources on social media and digital health.
Regina’s Blog
Regina’s Facebook page
Regina’s Twitter profile

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social media for healthcare

Global Social Media – TweetChat Pioneer

September 2, 2014 Janet Kennedy Get Social Health, Podcast 00:24:27 4 Comments

Dr. Gia SisonDr. Gia Sison is a physician who recognizes the potential of social media to share content among fellow physicians and educate patients.  Unusual? Maybe not in the US but as a practicing physician in the Philippines so is more than an early adopter, she is a social media pioneer. In our conversation we discuss how she started her social media journey by participating in Tweet chats happening in the US (12 hour difference). Dr. Sision joined with 3 other physicians in social media to promote the use of  Twitter to engage her nation in healthcare advocacy.

In our conversation we discuss how she found Twitter through Stanford’s #MEDx chat and then joined the #HCLDR and #HCSM chats to engage colleagues around the world.

To follow along, here is a time stamp of our conversation:

00:00 Introduction
00:10 EHR 2.0 Advertisement
00:51 Opening
01:16 Welcome
01:52 Hey – Dr. Sison is in the Philippines!
02:26 Maritime health care & tele-medicine
04:00 How do you perform health care at sea?
05:05 Is there a similar HIPAA law in the Philippines?
06:00 What is the state of social media in the Philippines?
06:33 Help from @NurseFriendly & #healthxph
06:50 #HCLDR chat – #HCSM chat
07:30 Are you encouraging physicians or patients to enter social media?
08:05 Who is involved in Philippines Tweet Chats?
09:30 Are you using Twitter to teach health education or about using social media?
10:05 Are all your Tweet chats global?
10:48 WHO project
11:40 Youth and social media in the Philippines
12:40 What other social media platforms do you use?
13:06 How do you manage to be involved in so many US Tweetchats?
13:38 MEDx at Stanford
13:55 Social media used for physician promotion?
15:00 Using Facebook to educate about Ebola
Ebola Symptoms17:02 Closer to Ebola in NC than the Philippines
18:00 Dr. Sison’s breast cancer journey
18:53 Patient privacy and social media. “A Culture of Shyness”
20:32 Mental Health Stigma
21:30 Social media goal – to drive in-person engagement
22:58 Dr. Sison “walks the walk”
23:20 Stanford’s MEDx program
24:35 Social Media is a great tool for learning
26:17 Social Media Tip from Theresa Robinson of Express Mobile Solutions “Keep it short and Sweet”
26:46 Close

Visit our resources page for more valuable (and free!) resources on social media and digital health:

Contact Dr. Gia Sison:  LinkedIn, Twitter, Blog

Stanford’s MEDx program

#HCLDR Chat

#HCSM Chat

Ebola Facebook page

Nurse Friendly – Andrew Lopez

Philippines colleagues in social media:

Dr Iris Isip Tan @endocrine_witch
Dr Remo Aguilar @bonedoc
Dr Narciso Tapia @cebumd

 

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social media for healthcare

A Challenge to Cancer… and Healthcare from Stupid Cancer

August 26, 2014 Janet Kennedy Get Social Health, Podcast 00:32:20 0 Comments

Challenges. Facing them, beating them, issuing them. Matthew Zachary of Stupid Cancer does not take life as it comes. After facing life-threatening pediatric brain cancer at age 21 in 1995, Matthew found that a lack of resources made his cancer battle hard and lonely. He beat a six-month survival prediction to continue his college career, regain the ability to play piano and committed to making the battle against cancer for teens “suck a little less.”

Matthew founded Stupid Cancer in 2007 as a non-profit organization to empower those affected by young adult cancer through innovative and award-winning programs and services. They are the nation’s largest support community for the under-served population and serve as a bullhorn for the young adult cancer movement.

Matthew ZacharyLaunching in September 2014 in a beta, Stupid Cancer has developed an app that will connect teens with other teens anonymously. To hear more about the launch of Instapeer, tun in to the episode.

Follow the conversation with the time stamp of the episode below:

00:00 Intro
00:30 Advertisement: EHR2.0 HIPAA and Security Compliance
01:25 Meet Matthew Zachary
02:18 Fard Johnmar & the ePatient
03:28 Angry patients
05:00 Teens in the healthcare system
06:38 Nothing’s connected
07:38 80% of teens with cancer are treated in a rural setting
08:16 Chemo is chemo
08:32 How can teens connect with each other
10:35 Online forums are intimidating
11:07 What would a teen use to connect with other teens
Instapeer11:30 Instapeer – Free mobile app to connect teens and young adults to each other
12:00 Build for the teen, not their dad
14:15 We “make it suck a little less”
14:45 Beta launch requirements
15:55 Matthew’s cancer journey & launch of Stupid Cancer
18:47 Closing the gap
19:35 “Nothing had changed in the survival rate for teens in 10 years and that’s not OK’
20:15 Depression and teens with cancer
22:00 Living with, through and beyond cancer
23:05 18 years cancer free – not cured
24:00 What is Stupid Cancer
25:33 We deserve to be treated age appropriately
26:20 Where does your content come from
27:55 CancerCon
29:55 How are healthcare professionals and companies dealing with digital health
30:45 Digital health startups are a colossal waste of time
31:54 The digital health world does not know it’s audience
33:00 Challenging the digital health entrepreneurial hierarchy
34:32 Social Media Success Tip from Clarissa Schlistra

Visit our resources page for more valuable (and free!) resources on social media and digital health:

StupidCancer.org

Instapeer.org

CancerCon

Health 2.0

Fard Johnmar & “ePatient 2015 – 15 Surprising Trends Changing Health Care”

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social media for healthcare

CrowdFunding Cancer Research – Marty Smith

July 15, 2014 Janet Kennedy Get Social Health, Podcast 00:34:22 7 Comments
Martin Smith

Martin (Marty) Smith
Tech Cures Cancer

Martin (Marty) Smith is a serial entrepreneur and founder of an exciting initiative: Tech Cures Cancer Fund at the University of North Carolina Lineberger Cancer Center. He is also the founder of CureCancerStarter.org, one of the first crowdfunding websites for cancer research, working with five leading cancer research centers. He is also the founder and CEO of Curagami.com, a company whose marketing tools help SMBs curate and gamify content marketing to create profitable and sustainable online community. Oh, and he is also battling cancer.

Marty talks to Get Social Health about the radical change in his life when he heard the words cancer and his name in the same sentence. Realizing that he didn’t have the support group he needed to undergo an intensive cancer treatment he turned to the thing he knew best, the internet, and made his health journey public via social media. Rather than accept his situation as out of his control Marty made it his mission to raise funds for cancer research. The first challenge he undertook was a bicycle trip across the US that raised awareness of cancer known as “Martin’s Ride to Cure Cancer.” As he has battled his chronic case of Lymphocytic Leukemia he continued to challenge himself as a fundraiser and internet visionary by creating not one but two crowd funding foundations to support cancer research.

Listen to Marty’s story and tell me you are not amazed at his dedication, tenacity and resiliency.

Visit our resources page for more valuable (and free!) resources on social media and digital health

Curagami website
Twitter @Curagami 
UNC LinebergerTech Cures Cancer donation option (look at the bottom of the list).
Lineberger Cancer Center: Dr. van Deventer’s profile
Martin (Marty) Smith on Twitter:  @scenttrail

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social media for healthcare

Teen Cancer e-Patient Clarissa Schilstra

July 8, 2014 Janet Kennedy Get Social Health, Podcast 00:24:44 1 Comment
Cancer Survivor & Founder of teen-cancer.com

Cancer Survivor & Founder of teen-cancer.com

It was a great pleasure speaking with Clarissa Schlistra, a two-time Acute Lymphoblastic Leukemia survivor, college student, e-Patient and founder of teen-cancer.com. When I see the term “two-time…” I want to fill in the blanks with “…Heavyweight Champion of the World!” In Clarissa’s case, it’s an apt moniker because she has not only fought and won a tough battle with cancer, it has made her stronger and dedicated to helping other kids and youth in the same fight. As you will hear in our discussion, there is a unique challenge for teens undergoing treatment for a health issue. They are too old for toys or clowns but facing the challenges of growing up in a situation where there are very few other teens to interact with in person.

Clarissa found a resource while she was ill in Care Pages, a free website that enables patients and their families to connect online to give updates, send and receive messages. She was able to find other patients her age who shared valuable tips on dealing with her situation.

Visit our resources page for more valuable (and free!) resources on social media and digital health

Our Social Media Tip comes from Allison Carter, a freelance writer and content strategist at AllisonBCarter.com. Alison recommends “Engage, Social Media is about creating community.”

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