Get Social Health

Patients Like Me social media for healthcare

Patients Like Me: Sally Okun

March 31, 2015 Janet Kennedy 00:41:06 1 Comment

Patients Like Me is a health data-sharing platform that is transforming the way patients manage their own conditions. Sally Okun, VP Advocacy, Policy & Patient Safety at Patients Like Me visited Get Social Health to talk about how they want to change the way industry conducts research and improve patient care. The numbers of PatientsLikeMe.com are impressive:

300,000 members
2,300+ conditions
50+ published research studies
25 million data points about disease

Numbers aside, Sally shared the Patients Like Me mission to help patients connect in a peer-to-peer network. Through their mutual sharing and support patients can also share their personal health data with researchers and pharma companies to help find health solutions and improve outcomes. Listen to the podcast or catch specific moments by following the time stamps below:

00:00 Introduction
00:50 Patients online
02:15 “Dr. Google: What is “Patients Like Me?
05:00 Getting from Patients Like Me to medical research
05:58 Results: Epilepisy seizure metering
06:50 How do patients share their data with their physicians?
08:01 Are physicians using this data?
08:50 Seeking balance of data overwhelm vs. data useability
11:50 320,000 patients in database, 40,000 Multiple Sclerosis patients
13:15 Participation in pharma research
15:58 Patient benefit for participating in Patients Like Me
18:15 Impact of “connectedness”
18:37 Caregivers in Patients Like Me
21:43 Moderation by clinical specialists?
26:50 Persona based design for PatientsLikeMe.com community
25:32 Closed community sharing or social sharing?
28:05 Hospital private communities compared to Patients Like Me
30:38 What are the biggest misconceptions about online patient communities?
33:15 HIPAA
33:30 Is Patients Like Me growing?
35:50 Wellness apps
36:30 Demographics of Patients Like Me
38:45 Patient sharing is critical
40:05 Social Media Tip: Phyllis Khare “4 Ways to increase your online reach”

Patients Like Me social sites:

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Healthcare Social Media Tips

December 30, 2014 Janet Kennedy 00:27:11 3 Comments

An end of year show calls for a “Greatest Hits” episode. Since all the Get Social Health guests were wonderful interviews, how could I pick a “best”? Therefore I decided to create a “Greatest Tips” episode and looked for some of the best social media tips from some of healthcare’s most experienced and insightful marketing and social media practitioners. Many thanks are due to my former guests for providing a social media tip after their interviews. Plus I would like to give a shout-out to all the attendees at various conferences who were patient and generous with their time when I approached with a microphone and said; “Give me a social media tip, quick!” with no time to prepare their thoughts.

I would also like to mention the conferences where I was able to collect a lot of social media tips, the Mayo Clinic Social Media Residency & Week and the Carolinas Healthcare Public Relations and Marketing winter meeting.

Below are most of the LinkedIn profiles for my “tipsters.” If I missed anyone, please let me know!

Lee Aase
Alice Ackerman
Dr. Betsy Bennett
Chris Boyer
Greg Chang
Katrina Doell
Nick Goodmanson
Dan Hinmon
Sarah Hudson
Jake Jacobson
Amy Jassic
Drew Keller
Stacy Kendall
Sue Klein
Kaitlynn Knopp
Tom Lee
Ahava Leibtag
Dana Lewis
Ellie Martin
AJ Montpetit
Chris Nelson
Shane Perry
Jason Pratt
Lisa Ramshaw
Josie Salzman
Dr. Mike Sevilla
Emily Solecki
Tiffany Swift
Dr. Farris Timimi
Dr. Bryan Vartabedian
Bart Verholtz

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

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From Corporate Stress to Wellness Entrepreneur

September 16, 2014 Janet Kennedy 00:25:32 0 Comments

Population health discussions often revolve around breaking the chain of illness by focusing on wellness. Many innovations in patient wellness are being driven by entrepreneurs and startups. One such entrepreneur is Farnoosh Brock. She recently served as a judge at Triangle Startup Weekend Health where we caught up on her entrepreneurial journey that led her to her founding her company Prolific Living.
To drop in on specific parts of our conversation, refer to the time stamp below:

00:00 Welcome
00:43 Introduction to Farnoosh Brock
01:30 Judge for Triangle Startup Weekend
02:40 Holistic Health
03:02 Wellness concepts
04:02 “Too busy to be well?”
04:50 “If you don’t make time for wellness now, you’ll need to make time for illness later.”
05:58 Look at your life – What can you eliminate?
07:00 Transition from corporate world
08:20 Juicing
09:10 Publishing “The Health Juicers Bible”
10:00 Building an online community
11:10 BlogWorld (Now NMX – New Media Expo)
13:35 Engaging with online community
15:08 Relationships were key to building online business
16:45 Dealing with patient/health questions
20:00 Victim mentality helps no one.
22:18 Positive thinking and health outlook
24:00 Love yourself first
24:45 Social Media Tip: Dr. Gia Sison “Responsible Tweeting”

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

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Entrepreneurs Hacking Healthcare

September 9, 2014 Janet Kennedy 00:31:26 2 Comments

Many health-related projects are getting millions of dollars in venture and angel funding. But do you ever wonder where some projects get started? Startup Weekend is a global network of passionate leaders and entrepreneurs that create an environment to share ideas, form teams and launch startups – all in a 54 hour weekend! Startup Weekend hosts over 1,000 weekend events annually around the globe focused on a mission to inspire, educate and empower individuals, teams and communities.

Recently I have the opportunity to be on the organizing team for a Startup Weekend held in the Triangle of North Carolina (Raleigh, Durham, Chapel Hill) with a theme of “Health.” The Startup weekend experience is a full weekend from Friday at 5:00 pm to Sunday at 6:00 pm. The Triangle Startup Weekend runs a few hours shorter than other Startup Weekends. Why? It’s a mystery. A “traditional” Startup Weekend will have about half the participants with technical or design backgrounds and the other half will have business backgrounds.

Beginning with open mic pitches on Friday, attendees bring their best ideas and inspire others to join their team. Over Saturday and Sunday teams focus on customer development, validating their ideas, practicing LEAN Startup Methodologies and building a minimal viable product. On Sunday evening teams demo their prototypes and receive valuable feedback from a panel of experts.

What made this weekend different? By organizing under the theme of “Health” the event brought together a different mix of participants and the structure of the weekend added a few new twists. Our group was a little bit smaller than the typical event due to the summer weekend and the specialized theme of the event. Demographically we had an interesting mix including;

29 Men & 15 women on teams (Does not include volunteers, mentors, judges and audience) With 34% of teams having women that’s much higher than the 10-20% usually seen at Startup Weekend.
Normally you would have three categories of participants: Developers, Designers and Business (non-tech). In the case of our health event we also had 16 medical professionals – 32% of our participants.
Triangle Startup Weekend also had a high percentage of PHDs among the participants – 21!
Five of the teams were led by women including the team that won the “Best Overall” – Aura.

Throughout the weekend I was able to capture the experiences of the a number of the participants from the organizers to volunteers, mentors and judges. Let’s hear their reactions to their Triangle Startup Weekend Health experience.

Global Startup Weekend Facilitator: Shashi Jain
Participant: Tia Simpson
Participant: Michael Brown
Participant: Mike McNeill
Mentor: Dr. Michael Cousins
Organizer: Jon O’Donnell
Participant: Leo Alonzo
Participant: Christina
Volunteer: Dr. Dexter Louie
Presentation Coach: Andy Roth
Judge: Farnoosh Brock
Mentor: John Austin

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Global Social Media – TweetChat Pioneer

September 2, 2014 Janet Kennedy 00:24:27 4 Comments

Dr. 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
17:02 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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A Challenge to Cancer… and Healthcare from Stupid Cancer

August 26, 2014 Janet Kennedy 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.

Launching 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
11:30 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