Advocating for Pediatric Palliative Care with Social Media

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  • 1. Advocate forpediatric palliative care
  • 2. Hosted by:Renee BerryCEO, BeMoRe CHPCC.org/blogrenee@gobemore.org Facebook.com/ChildrensHospice@rfberry Twitter.com/CHPCC
  • 3. Can you make a differencefor 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 MediaOne-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 pediatricpalliative 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 patients 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 articles 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. Lims 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 Desirees 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 We’re logging in: Simple guiding principle: Tweet & Re-Tweet What is intersting to you. Click Here: Getting Started With Twitter Guide