1. A Advocating H ospice Online H for National Hospice and Palliative Care Organization’s 27th Management and Leadership Conference Saturday March 31, 2012 11:45am - 12:45pm (Session 12D) Renee Berry Vanessa Callison-Burch CEO, BeMoRe Executive Director, What Matters Now email@example.com firstname.lastname@example.org @rfberry @vcb
2. Do hospice organizationsneed to be participating on online platforms?
4. WWhich online platforms will advanceorganizational goals?
5. Simply, these ones. This is what we will review today.
6. (just kidding!) But how do you make it all ﬁt together?
7. the good news is... Y C But howC an make it You do you all ﬁt together? se t he ll of u ta it ho w
8. before we get into the details h ... hello LLet’s take a second to introduce ourselves.
9. 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• 4th year attending NHPCO’s MLC, 1st year presenting... honored to be here!• Passion for making a difference in the @rfberry ﬁeld; started as a hospice volunteer• Disclosure: Provides public engagement consulting services for online presence development
10. Vanessa Callison-Burch • Became a hospice volunteer in high school • Loved hospice so much that I thought I might become a hospice social worker • Ended up in a career in technology instead; currently work in Silicon Valley in software engineering • United my love for hospice with my experience in web development by co- founding a nonproﬁt to provide free personal websites for hospice and @vcb palliative care patients and their families • Passionate about helping transform our culture’s relationship to life-changing illness and death & dying
11. (back to this question) W Which online platforms will advance organizational goals?
12. (back to this question) W Which online platforms will advance organizational goals? ... in hospice.
13. Today, we’ll discuss: Online Tools Supporting Patients and Families Hospice Collaboration Engaging a National Participatory Audience Around HospiceOnline Tools for HospiceCommunity Engagement
14. Today, we’ll discuss: Starting with Online Tools Supporting Patients and Families Hospice Collaboration Engaging a National Participatory Audience Around HospiceOnline Tools for HospiceCommunity Engagement
15. Online Tools for Supporting Patients and Families Online journals: Free, personal and private websites that connect people experiencing a health challenge with family and friends: www.caringbridge.org Shared care calendars: Free community websites to help manage the daily tasks that become a challenge during times of need: www.lotsahelpinghands.com Digitized memories: A free way to organize, share and discover old photos and memories of family and friends: www.1000memories.com Space for reﬂection: Free, personal, private websites which celebrate and honor people going through life-changing illness: www.whatmattersnow.org
16. Supporting Patients and Families Case study: What Matters Now Provides free personal websites which support patients & families to: - Come together to love, honor and remember - Share what’s happening - Coordinate support - Nourish their spirits, reﬂect, and cultivate peace Life-changing illness calls us to focus on what matters now
17. Supporting Patients and Families Benefits How do What Matters Now websites benefit hospice and palliative care programs? serving the emotional & spiritual needs of patients & families raising donations for palliative care & hospice programs a natural form of community outreach community outreach igniting conversations about end of life care choices
18. Supporting Patients and Families Features What’s in a What Matters Now website? Updates: Saving caregivers the challenge of repeating news over and over again on the phone. Keeping everyone informed. Guest Book: Messages of love and support from family and friends that can be savored again and again. Photos: An online album of favorite photos added by the patient and by family and friends. Reﬂections: Questions that spark important conversations about a patient’s life story, favorite things, and insights into life’s big questions. Lend a Hand: Questions that guide caregivers and patients to express what support they need from family and friends. Resources: Books and websites that help people learn about living with serious illness, caregiving, planning ahead, and expressing what matters most. Donations: An easy way for friends and family to give ﬁnancial support to the program caring for their loved one.
19. Supporting Patients and Families Dave’s Story How does What Matters Now benefit patients? Throughout the spring and summer of 2011, Dave shared his experience of dying and his memories of the most important moments of his life on his website. He no longer had energy for phone calls and visits, yet friends from throughout his entire life came together on the website and poured out hundreds of messages expressing what Dave had meant to them.
20. Supporting Patients and Families Dave’s Story“ Thank you for creating this website. What gets me out of bed in the morning is the desire to check for updates. It’s a wonderful gift you have provided me. Dave W. in an email to Vanessa & team, April 2011
21. Supporting Patients and Families Dave’s Story“ My hope is that my experience will help some of you deal with the inevitable. Somehow, during the last three months, I have found a lot of joy and a sense of adventure in this process. It’s a beautiful world. Dave W.’s final message posted to his website by his wife on the day following his death
22. Supporting Patients and Families Dave’s Story“ Thank you so much for providing Dave with the opportunity to share his end of life journey with his loved ones. I believe the correspondence extended and enriched his life and will be with us always. It was truly extraordinary. Rebecca W., Dave’s wife in an email to Vanessa & team, December 2011
23. Supporting Patients and Families Benefits How do What Matters Now websites benefit families and friends? Manageable Communication Meaningful Connection Comfort
24. Supporting Patients and Families Manageable Communication“ I have an Aunt who is cared for by her daughter-in-law in Mississippi and it warms my heart to know that all I have to do is open my email and ﬁnd an update on my Aunt, sent by her website. It makes it so much easier on my family here in Indiana to know how she is doing every day without the long distance phone calls which as you know can rack up one’s phone bill. I wish this site would have been around in 2008-2009 when my father was in hospice care. It would have made it so much easier to update all family members at one time. Cyna R.
25. Supporting Patients and Families Meaningful Connection“ My mother died in February at only 63, of cancer. At a time when we were dealing with the eventual loss of our loved one, our website brought our family closer and made it easy to keep everyone updated. It was comforting to see loved ones posts, memories and pictures. Stacy W.
26. Supporting Patients and Families Comfort“ I came upon this website while trying to distract myself from the heartbreaking task of caring for my Mom who was dying from lung cancer. The website was perfect because I found it when Mom no longer wanted to speak to or see anyone other than my sisters and myself. It helped keep everyone informed on Moms condition without me having to repeat it over and over. At the end of each day, I would read the comments written in Moms guest book. I felt comforted reading the lovely words about Mom, and Mom enjoyed when I would read them to her. Mom passed in the early morning of October 1. And as much as I miss her and hate that she had to experience the agony of cancer - Im grateful for the Hospice team and our website. It made a terrible time just a bit more bearable. Jenny M.
27. Supporting Patients and Families Getting Started Tips for implementation at your organization - Check out various online tools and choose your favorite(s) - Share information with your volunteers, social workers, spiritual care and other staff - Provide talking points to your staff so that they can introduce the websites to families - Include a ﬂyer in admissions packets - Train volunteers to help patients set up their websites if needed - During IDT meetings, ask which families would beneﬁt from a website and identify who will let them know about it
28. Next, we’ll discuss:Online Tools for Enhancing Online Tools Supporting Hospice Patient-Family Patients and Families Communication Hospice Collaboration Engaging a National Participatory Audience Around HospiceOnline Tools for HospiceCommunity Engagement
29. Tools for Enhancing Hospice Community Engagement Print Website Blog Social Media Traditional New Most hospices understand Some hospices 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.
30. Tools for Enhancing Hospice Community Engagement Print Website Blog Social Media Traditional New Most hospices understand Some hospices understand these tools as a necessity. these tools as a necessity. The bottom line is, they are all important.
31. Tools for Enhancing Hospice Community Engagement Print Website Blog Social Media Traditional NewIf you’re here And interested in also being... Here So where do you begin to move forward?
32. 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.
33. OnlineTools for Enhancing Hospice 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.
34. Hospice Community Engagement Platform Spotlight Blogs Websites tend to have stagnant information and at a certain point organizations run out of opportunities to be content providers without a blog. Blogs are a huge opportunity for hospice organizations to feature their stories. Blogs are less formal than websites but an extension to what can be amplified with social media. Do Don’t • Feature stories of hospice having an • Duplicate a tone from traditional press impact on a patient and family experience releases or marketing brochures • Provide answers to common questions • Try to have one person do all the writing from patients and families • Feature patient or family stories without • Respond to interesting and articles from written consent the traditional media • Forget to measure progress over time • Highlight topics and articles published in through increased publication frequency scientiﬁc journals and blog analytics
35. OnlineTools for Enhancing Hospice Community Engagement How important is Facebook to hospice? Facebook provides an unprecedented opportunity to build and Facebook accumulate an audience. Website Blog Social Platforms Google and other online advertisements have provided an opportunity for increased online traffic to hospice websites. Now, Facebook Ads and Facebook engagement provides an opportunity to maintain individual’s attention towards a topic or issue in a different way than ever before.
36. Hospice Community Engagement Platform Spotlight Facebook The real value in utilizing the Facebook platform is through Facebook pages. Do Don’t • Sign up for a “group” or a personal page • Utilize the Facebook Page feature for your organization • Plan ahead with an editorial calendar • Post less than once per week • Engage with organizations and news • Assign page management on top of outlets in your local community someone’s position without properly allocating time for quality implementation • Track progress and analyze success and opportunities for improvement • Forget to invite and moderate commentary
37. OnlineTools for Enhancing Hospice 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? Website Blog Social Platforms Headlines. (and) Professional public conversations. There is incredible opportunity for engaging public understanding of hospice and palliative medicine through these open conversations.
38. Hospice Community Engagement 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)
39. OnlineTools for Enhancing Hospice Community Engagement What is LinkedIn? An online platform for maintaining professional connections. Website Blog Social Platforms 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).
40. Hospice Community Engagement 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
41. OnlineTools for Enhancing Hospice Community Engagement Video Platforms YouTube is one platform to utilize for video engagement. An alternative effective platform is Vimeo. Website Blog Social Platforms Video is an underutilized opportunity for engaging the public in the utmost importance of the role of hospice in quality healthcare implementation. One strategy for video engagement is to utilize video clips for a quick soundbite to help peek interest in a topic, following up with a blog post or web page with further resources for understanding.
42. Hospice Community Engagement Platform Spotlight YouTube/Video Platforms Do Don’t • Forget videos can be used across • Embed videos within platforms (rather platforms: website, blog, and Facebook, than linking externally to videos) ampliﬁed with Twitter & LinkedIn • Utilize (and embed) relevant videos even if • Produce video clips longer than two your organization didn’t produce them minutes. Ideal length 30seconds to 1:15 • Utilize video to answer questions that may • Focus on driving trafﬁc to the video seem basic to you or your organization platform • Interview people in a variety of disciplines • Worry about audience accumulation on and positions within your organization the video platform
43. Finally, we’ll discuss: Online Tools Supporting Patients and Families Hospice Collaboration Engaging a National Participatory Audience Around Hospice Online Tools for Hospice Community Engagement
44. 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.
45. 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.
46. 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
47. 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
48. Hospice Engaging a National Participatory Audience FDA Limits Liquid Morphine 1. 2. Full presentation here. 3. 4.
49. Hospice Engaging a National Participatory Audience Modern Healthcare Big Impact Tournament“ Modern Healthcare asked its readers to vote online on its website, ModernHealthcare.com, for the person, event, organization or innovation ” that they thought had the biggest impact on healthcare over the past 3 decades. Every two weeks, the ﬁeld narrowed by half until the championship round, which ran from June 13-24, 2011. via Modern Healthcare Big Impact Tournament How To Play The hospice community online came together each voting round to vote for hospice.
50. Hospice Engaging a National Participatory Audience Modern Healthcare Big Impact Tournament
51. Hospice Engaging a National Participatory Audience Modern Healthcare Big Impact Tournament
52. Hospice Engaging a National Participatory Audience Modern Healthcare Big Impact Tournament Hospice Wins! http://www.modernhealthcare.com/article/20110725/SUPPLEMENT/110729979/-1
53. Hospice Engaging a National Participatory Audience Modern Healthcare Big Impact Tournament“ By a nearly 3-to-1 margin, Hospice Care defeated the Institute for Healthcare Improvement as the one person, event, organization or innovation that had the biggest impact on the healthcare delivery system over the past 35 years. The ﬁnal score was 1,968 to 682. Hospice Care, a No. 12 seed in the Innovations region, is a widely embraced model for compassionate care for people facing a terminal illness. via Modern Healthcare Big Impact Tournament
54. 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.
55. Hospice Engaging a National Participatory Audience #hpm TweetChat (via PALLIMED)
56. Hospice Engaging a National Participatory Audience #hpm TweetChat“ So excited to connect to other professionals who are also passionate about end of life issues. I am hoping to enter a PhD program with a focus on end of life communication and the discussions on #hpm give me an idea of the current issues in the ﬁeld. Lizzy Miles @_Lizzy_
57. Hospice Engaging a National Participatory Audience #hpm TweetChat“ Im not entirely sure what compelled me to join the inaugural #hpm chat, but it has literally changed the course of my career. literally changed the course of my career. I was curious how one could build community about dying. How little I understood then and how far Ive come in my understanding is due to a large part because of the continuing education #hpm provided and led to my being engaged as the community manager at www.VirtualHospice.ca. Colleen Young, @Colleen_Young
58. Hospice Engaging a National Participatory Audience #hpm TweetChat“ #hpm is the most welcoming group on Twitter. I particularly appreciate the efforts made to include all disciplines of health care, palliative care and people who know nothing about #hpm. Colleen Young, @Colleen_Young
59. Hospice Engaging a National Participatory Audience #hpm TweetChat“ Im supportive the of the #hpm tweetchat, but ﬁnd myself lurking more often than actively participating. I live on the east coast and ﬁnd that by 9-10PM my brain is tired. I spend all day thinking about these issues and by 9-10PM Im either reading for pleasure, watching a Red Sox game or getting ready for sleep (Im at work at 6:30-ish in the morning). I do enjoy the diversity of participants and topics and I do share comments and ideas with my Palliative Team. Beth Arnold, MSW @emarnold14
60. Hospice Engaging a National Participatory Audience #hpm TweetChat“ I want to thank all of you for your dedication and passion for this topic. Both of my parents died of cancer and both my husband and myself are cancer survivors. I fully intent to utilize early palliative care if/ fully intent to utilize early palliative care if/when the time comes. None of us ever know when when the time that will be. Its essential that this topic become part of everyones health vocabulary in a positive way. Jody Schoger, @jodyMS
61. Hospice Engaging a National Participatory Audience #hpm TweetChat“ I am interested in educating cancer survivors about the beneﬁts and beauty of early palliative care and end of life issues. have been impressed from the beginning with the I have been impressed from the beginning with the passion the majority of participants hold for the their passion chosen ﬁeld. At the same time, Ive been equally impressed and (occasionally alarmed) by a number of clinicians (often social workers) who really have no sense of what serious/terminal illness is like for patients and their families. Jody Schoger, @jodyMS
62. Hospice Engaging a National Participatory Audience #hpm TweetChat“ #hpm tweetchat is so important! It stimulates much needed discussion about issues related to serious illness & end of life care among a diverse group of clinicians & non-clinicians. I enjoy the opportunity to network with others, learn, and hopefully teach others. Being a part of a community of people who believe in what hospice & palliative care can do for patients, their families and the healthcare system is refreshing and exciting. Alicia Bloom, MSW @aliciabloom
63. Hospice Engaging a National Participatory Audience 2010 National Hospice Month Video An example of national project made possible by connections and online collaboration to raise awareness during National Hospice Month in 2010.
64. Hospice Engaging a National Participatory Audience AAHPM & HPNA Annual Assembly 2011
65. Hospice Engaging a National Participatory Audience AAHPM & HPNA Annual Assembly 2011
66. Hospice Engaging a National Participatory Audience AAHPM & HPNA Annual Assembly 2011
67. Hospice Engaging a National Participatory Audience AAHPM & HPNA Annual Assembly 2011
68. Hospice Engaging a National Participatory Audience AAHPM & HPNA Annual Assembly 2011
69. Hospice Engaging a National Participatory Audience AAHPM & HPNA Annual Assembly 2011
70. Hospice Engaging a National Participatory Audience Other Hospice Tweets on Social Media
71. A Advocating H ospice Online H for National Hospice and Palliative Care Organization’s 27th Management and Leadership Conference Saturday March 31, 2012 11:45am - 12:45pm (Session 12D) Questions? Renee Berry Vanessa Callison-Burch CEO, BeMoRe Executive Director, What Matters Now email@example.com firstname.lastname@example.org @rfberry @vcb