1. Advocate for
pediatric palliative care

2. Hosted by:
Renee Berry
CEO, BeMoRe CHPCC.org/blog
renee@gobemore.org
Facebook.com/ChildrensHospice
@rfberry
Twitter.com/CHPCC

3. Can you make a difference
for pediatric palliative care
with social media?

4. Yes.

5. Step 1:
Learn the
Basics

6. Worried About Time? How do you make
this work?

7. Renée Berry
• Co-Founder of the #hpm TweetChat, an
online interdisciplinary forum on
Twitter about hospice and palliative
care
• Chief Executive Officer of BeMoRe, a
Silicon Valley startup with a mission to
foster passion empowerment
• Inspired every year by the awesome
work of the CHPCC Team!
• Passion for making a difference in the
@rfberry
field; started as a hospice volunteer
• Disclosure: Provides public engagement
consulting services for online presence
development

8. Tools for
Enhancing Community Engagement
Print Website Blog Social Media
Traditional New
Most organizations understand Some organizations understand
these tools as a necessity. these tools as a necessity.
Many are recognizing the importance of social media but
are unsure about where to start and how to
effectively manage time for an engaging online presence.

9. Tools for
Enhancing Community Engagement
Print Website Blog Social Media
Traditional New
Most organizations understand Some organizations understand
these tools as a necessity. these tools as a necessity.
AND how and WHERE do individuals fit into this?

10. Tools for
Enhancing Hospice Community Engagement
Print Website Blog Social Media
One-Way Messaging Conversational
Pushing messages at people on conversational platforms is not effective.
Begin by understanding the major difference among
these tools. (This is important for individuals and for organizations)

11. OnlineTools for
Enhancing Community Engagement
Facebook
Website Blog Social Platforms
Utilizing a blog as an engagement platform will enhance your organization’s
ability to provide content for other social platforms.

12. OnlineTools for
A professional tool?
Facebook profiles tend to be a personal
Facebook space more than a professional space.
Can you still advocate with your
personal profile? Start
with
pressin
g the
Like
button

13. OnlineTools for
Can you still advocate with your personal profile?
Using the share button makes a big
difference in helping extend the reach of
Facebook
pediatric palliative care stories.
sharing
pediatric
palliative care
stories help
increase
awareness

14. OnlineTools for
Enhancing Community Engagement
What is LinkedIn?
An online platform for maintaining professional connections.
LinkedIn is a great alternative to connecting with colleagues
and professional contacts on Facebook.
Often people invite Facebook connections without realizing the culture
of personal connection on the platform. It is more professionally
acceptable to maintain professional connections on LinkedIn
(ESPECIALLY with manager’s direct reports).

15. Platform Spotlight
LinkedIn
LinkedIn is a great opportunity to maintain professional contacts. It ensures
you can stay connected with professionally relevant people without manual
maintenance of your contact database (like Outlook contacts).
Do Don’t
• Think LinkedIn is just for people looking
• Connect with friends and professional
for a job
contacts. Invite people you meet at
conferences.
• Think being on MyNHPCO is a reason to
not engage on LinkedIn
• Remember your network can be beyond
hospice and palliative care professionals
• Request to connect with people you don’t
know
• Occasionally share professional resources
• Underestimate the importance of
• Maintain appropriate profile information as
providing your picture and appropriate
you progress through your career
work history information

16. OnlineTools for
Enhancing Community Engagement
What is Twitter?
You’ve probably heard of the micro-blogging site with limited
characters in messaging. What do you say in 140 characters?
Headlines. (and) Professional public conversations.
There is incredible opportunity for engaging public understanding of
pediatric palliative care through these open conversations.

17. Platform Spotlight
Twitter
Twitter provides an unprecedented opportunity to connect with a new
audience.
Do Don’t
• Understand Twitter is the best opportunity to • Have Facebook auto-posts to Twitter
engage new individuals in your work
• Forget to Re-Tweet other individuals and
• Remember Twitter values the people behind organizations, comment and say thank
the brand & an authentic voice
you for message amplification
• Remember listening first and engaging in Re-
• Think effective engagement can be done
Tweets is an effective way to get started
without understanding platform culture
• Utilize platform tools such as Hootsuite once
you’ve established a base understanding of • Have multiple branded accounts without
Twitter appropriage resources (true for fb too)

18. Hospice Engaging a National Participatory Audience
#hpm TweetChat Visual Example:
A weekly interdiciplinary forum discussing
hospice and palliative care topics.
Founded in July, 2010 #hpm was the first medical TweetChat
spericalty TweetChatThe first medical specialty
TweetChat.
Over 40 million impressions generated from the
#hpm hashtag from over 50,000 thousand tweets
and more than 3,000 contributors since February
2011. What is it?
The #hpm community has people from all over the
country and even some international participants. The
backgrounds and interests are very diverse, including,
nurses, sociologists, physicians, hospice or palliative
care patient's family members, health policy
professors, entrepreneurs, social workers, healthcare
executives, human rights advocacy organizations,
hospital departments, healthcare organizations,
chaplains and online community advocates.

19. Hospice Engaging a National Participatory Audience
Responding to the New York Times
“
She preached the gentle gospel
of her profession, persuading
patients to confront their
illnesses and get their affairs in
order and, above all, ensuring
that their last weeks were not
spent in unbearable pain.
The doctors began to understand the
extent of her underlying cancer, “they
asked me if I wanted palliative care to
come and see me.”
She angrily refused. She had been telling
other people to let go. But faced with
that thought herself, at the age of 40, she
wanted to fight on.
Link to article here.
The New York Times clearly missed many important aspects in this article about the
end of life of a palliative care physician, Desiree Pardi.

20. Hospice Engaging a National Participatory Audience
Responding to the New York Times
An incredible professional discussion began in the
comments section of Lyle Fettig’s post on PALLIMED.
“
posted here on PALLIMED
Unfortunately, the article's overall theme undercuts
the idea that patient autonomy and goals of care are
central to palliative care in spite of giving a fine
example in Dr. Lim's efforts. Rather, palliative care is
painted as existing mainly for the purpose of cajoling
patients to accept the unacceptable and to "be ok"
with the idea of receiving only therapies oriented
towards comfort. Lyle Fettig M..D.

21. Hospice Engaging a National Participatory Audience
Responding to the New York Times
Robert Pardi, Desiree Pardi’s husband, adds to the
discussion in the comments section of Lyle Fettig’s
“
post on PALLIMED. Robert Pardi’s full comment here.
I am Desiree's husband and while I appreciate the numerous comments posted
and the fact that this "story" has generated so much discussion, I need to convey
that the article was very misleading and that many of the take away messages are
wrongly presented.
My wife, knowing her life was going to be shorter than most spent her remaining
years preaching the value of Palliative Care; something she herself accepted in her
life.
The problem is most people lump Palliative Care and end-of-life care as one field
of medicine. They are two separate disciplines. Second Palliative Care is about
providing symptom support throughout all stages of a chronic disease, it is about
providing patients with a full understanding of their condition and treatments so
they can live a life they want.
Robert Pardi

22. Hospice Engaging a National Participatory Audience
Responding to the New York Times
Robert Pardi’s full comment here.
Can you imagine responding on a blog to an emotional
“journalistic story” about your spouse, written just following
their death? ... a blog?!
Seeing the (live) thoughts from leaders in the field AND
Robert Pardi’s insightful and appropriate commentary
featured on a blog was a defining moment for me in
understanding the value of blogs as professional platforms.
-renee berry

23. Hospice Engaging a National Participatory Audience
FDA Limits Liquid Morphine
1. 2.
Full presentation here.
3. 4.

24. Getting Started With
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Simple guiding principle: Tweet & Re-Tweet What is intersting to you.
Click Here: Getting Started
With Twitter Guide