advocating for hospice online

CEO, BeMoRe [email protected] @rfberry

Executive Director, What Matters [email protected]@vcb

National Hospice and Palliative Care Organization’s 27th Management and Leadership ConferenceSaturday March 31, 2012 11:45am - 12:45pm (Session 12D)

A dvocating for H ospice Online

Renee Berry Vanessa Callison-Burch

A H

mailto:[email protected]





Do hospice organizations need to be participating

on online platforms?need to be

Which online platforms will advance

organizational goals?

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these ones.Simply, This is what we will review today.

But how do you make it all fit together?

(just kidding!)

But how do you make it all fit together?

You C an

without all of th

ese

the good news is...

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... hello

Let’s take a second to introduce ourselves.

before we get into the details

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• 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

• Passion for making a difference in the field; started as a hospice volunteer

• Disclosure: Provides public engagement consulting services for online presence development

• 4th year attending NHPCO’s MLC, 1st year presenting... honored to be here!

Renée Berry

@rfberry

• 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 palliative care patients and their families

• Passionate about helping transform our culture’s relationship to life-changing illness and death & dying

Vanessa Callison-Burch

@vcb



(back to this question)

W



(back to this question)

W

... in hospice.

Today, we’ll discuss:

Online Tools for Hospice Community Engagement

Engaging a National Participatory Audience

Around Hospice

Hospice Collaboration

Online Tools Supporting Patients and Families



Around Hospice



Today, we’ll discuss:Starting with

Supporting Patients and FamiliesOnline Tools for

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

http://www.caringbridge.org

http://www.caringbridge.org

http://www.lotsahelpinghands.com

http://www.lotsahelpinghands.com

http://www.1000memories.com

http://www.1000memories.com

http://www.whatmattersnow.org

http://www.whatmattersnow.org

Supporting Patients and Families

Case study: What Matters Now

Life-changing illness calls us to focus on

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


Benefits

serving the emotional & spiritual needs of patients & families serving the emotional & spiritual needs

How do What Matters Now websites benefit hospice and palliative care programs?

raising donations for palliative care & hospice programs

igniting conversations about end of life care choices

raising donations

igniting conversations

a natural form of community outreachcommunity outreach


FeaturesWhat’s in a What Matters Now website?

Guest Book: Messages of love and support from family and friends that can be savored again and again.

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.

Updates: Saving caregivers the challenge of repeating news over and over again on the phone. Keeping everyone informed.

Photos: An online album of favorite photos added by the patient and by family and friends.


Dave’s StoryHow 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.


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.

Dave’s Story

wonderful gift

in an email to Vanessa & team, April 2011


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

Dave’s Story

posted to his website by his wife on the day following his death

It’s a beautiful world.


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

Dave’s Story

in an email to Vanessa & team, December 2011

It was truly extraordinary.


Benefits

Manageable Communication

How do What Matters Now websites benefit families and friends?

Meaningful Connection

Comfort


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.

Manageable Communication


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.

Meaningful Connection


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 Mom's condition without me having to repeat it over and over. At the end of each day, I would read the comments written in Mom's 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 - I'm grateful for the Hospice team and our website. It made a terrible time just a bit more bearable.

“

”Jenny M.

Comfort


Getting StartedTips 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

Next, we’ll discuss:


Around Hospice



Online Tools for Enhancing Hospice Patient-Family

Communication


Enhancing Hospice Community EngagementTools for

Most hospices understand these tools as a necessity.

Print Website Blog Social Media

Traditional New

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.

Some hospices understand these tools as a necessity.


Most hospices understand these tools as a necessity.


Traditional New

The bottom line is, they are all important.

Some hospices understand these tools as a necessity.


If you’re here


Traditional New

So where do you begin to move forward?

And interested in also being... Here



Begin by understanding the major difference among these tools.

Pushing messages at people on conversational platforms is not effective.

One-Way Messaging Conversational

Enhancing Hospice Community EngagementOnlineTools for

Facebook

Utilizing a blog as an engagement platform will enhance your organization’s ability to provide content for other social platforms.

Blog Social PlatformsWebsite

BlogsHospice Community Engagement Platform Spotlight

Do Don’t• Feature stories of hospice having an

impact on a patient and family experience

• Provide answers to common questions from patients and families

• Respond to interesting and articles from the traditional media

• Highlight topics and articles published in scientific journals

Feature staff and executives and their commitment to hospice and palliative care

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.

• Duplicate a tone from traditional press releases or marketing brochures

• Try to have one person do all the writing

• Feature patient or family stories without written consent

• Forget to measure progress over time through increased publication frequency and blog analytics


Websites tend to have stagnant information and at a certain point organizations run out of opportunities to be content providers without a blog.


Facebook

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.


Facebook provides an unprecedented opportunity to build and accumulate an audience.

How important is Facebook to hospice?

FacebookHospice Community Engagement Platform Spotlight

Do Don’t• Utilize the Facebook Page feature

• Plan ahead with an editorial calendar

• Engage with organizations and news outlets in your local community

• Track progress and analyze success and opportunities for improvement

• Sign up for a “group” or a personal page for your organization

• Post less than once per week

• Assign page management on top of someone’s position without properly allocating time for quality implementation

• Forget to invite and moderate commentary


The real value in utilizing the Facebook platform is through Facebook pages.


Headlines.


What is Twitter?You’ve probably heard of the micro-blogging site with limited characters in messaging. What do you say in 140 characters?

(and) Professional public conversations.

There is incredible opportunity for engaging public understanding of hospice and palliative medicine through these open conversations.

TwitterHospice Community Engagement Platform Spotlight

Twitter provides an unprecedented opportunity to connect with a new audience.

Do Don’t• Have Facebook auto-posts to Twitter

• Forget to Re-Tweet other individuals and organizations, comment and say thank you for message amplification

• Think effective engagement can be done without understanding platform culture

• Have multiple branded accounts without appropriage resources (true for fb too)


• Understand Twitter is the best opportunity to engage new individuals in your work

• Remember Twitter values the people behind the brand & an authentic voice

• Remember listening first and engaging in Re-Tweets is an effective way to get started

• Utilize platform tools such as Hootsuite once you’ve established a base understanding of Twitter


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).


What is LinkedIn?An online platform for maintaining professional connections.

LinkedInHospice Community Engagement Platform Spotlight

Do Don’t• Think LinkedIn is just for people looking

for a job

• Think being on MyNHPCO is a reason to not engage on LinkedIn

• Request to connect with people you don’t know

• Underestimate the importance of providing your picture and appropriate work history information


• Connect with friends and professional contacts. Invite people you meet at conferences.

• Remember your network can be beyond hospice and palliative care professionals

• Occasionally share professional resources

• Maintain appropriate profile information as you progress through your career


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).


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.


Video PlatformsYouTube is one platform to utilize for video engagement. An alternative effective platform is Vimeo.

YouTube/Video PlatformsHospice Community Engagement Platform Spotlight

Do Don’t• Forget videos can be used across

platforms: website, blog, and Facebook, amplified with Twitter & LinkedIn

• Produce video clips longer than two minutes. Ideal length 30seconds to 1:15

• Focus on driving traffic to the video platform

• Worry about audience accumulation on the video platform


• Embed videos within platforms (rather than linking externally to videos)

• Utilize (and embed) relevant videos even if your organization didn’t produce them

• Utilize video to answer questions that may seem basic to you or your organization

• Interview people in a variety of disciplines and positions within your organization

Finally, we’ll discuss:



Around Hospice



Responding to the New York TimesHospice Engaging a National Participatory Audience

Link to article here.

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.

“”The New York Times clearly missed many important aspects in this article about the

end of life of a palliative care physician, Desiree Pardi.

http://www.nytimes.com/2010/04/04/health/04doctor.html?pagewanted=1&sq=desiree%2520pardi&st=cse&scp=1

http://www.nytimes.com/2010/04/04/health/04doctor.html?pagewanted=1&sq=desiree%2520pardi&st=cse&scp=1


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.

posted here on PALLIMED

“”

An incredible professional discussion began in the comments section of Lyle Fettig’s post on PALLIMED.

http://www.pallimed.org/2010/04/nyt-on-death-of-palliative-care.html

http://www.pallimed.org/2010/04/nyt-on-death-of-palliative-care.html


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

“”

Robert Pardi’s full comment here.

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.

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

FDA Limits Liquid MorphineHospice Engaging a National Participatory Audience

Full presentation here.

1. 2.

3. 4.

http://www.slideshare.net/ctsinclair/social-media-in-health-care

http://www.slideshare.net/ctsinclair/social-media-in-health-care

Hospice Engaging a National Participatory Audience

How To Play“ ”via Modern Healthcare Big Impact Tournament

Modern Healthcare Big Impact Tournament

The hospice community online came together each voting round to vote for hospice.

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.

http://www.modernhealthcare.com/article/20110725/SUPPLEMENT/110729979%23ixzz1nRccutev%20



Modern Healthcare Big Impact Tournament

Modern Healthcare Big Impact TournamentHospice Engaging a National Participatory Audience

Hospice Wins!

http://www.modernhealthcare.com/article/20110725/SUPPLEMENT/110729979/-1



Modern Healthcare Big Impact TournamentHospice Engaging a National Participatory Audience

“

”

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.

via Modern Healthcare Big Impact Tournament

Hospice Care, a No. 12 seed in the Innovations region, is a widely embraced model for compassionate care for people facing a terminal illness.



#hpm TweetChatHospice Engaging a National Participatory Audience

Founded in July, 2010 #hpm was the first medical spericalty TweetChatThe first medical specialty TweetChat.

Visual Example:

TweetChat

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.

A weekly interdiciplinary forum discussing hospice and palliative care topics.

Over 40 million impressions generated from the #hpm hashtag from over 50,000 thousand tweets and more than 3,000 contributors since February 2011.


(via PALLIMED)


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_


“

”Colleen Young, @Colleen_Young

I'm not entirely sure what compelled me to join the inaugural #hpm chat, but it has 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 I've 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.

course of my career.

#hpm TweetChat

literally changed the

http://www.virtualhospice.ca/

http://www.virtualhospice.ca/


#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

#hpm TweetChat


I'm 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 I'm either reading for pleasure, watching a Red Sox game or getting ready for sleep (I'm at work at 6:30-ish in the morning).

“

”Beth Arnold, MSW @emarnold14

I do enjoy the diversity of participants and topics and I do share comments and ideas with my Palliative Team.

#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/when the time comes. None of us ever know when that will be. It's essential that this topic become part of everyone's health vocabulary in a positive way.

“

”Jody Schoger, @jodyMS

#hpm TweetChat

I fully intent to utilize early palliative careif/when the time comes.


“

”Jody Schoger, @jodyMS

I have been impressed from the beginning with the passion the majority of participants hold for the their chosen field. At the same time, I've 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.

I am interested in educating cancer survivors about the benefits and beauty of early palliative care and end of life issues.

I have been impressed from the beginning with thepassion

#hpm TweetChat


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.

#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.“

”Alicia Bloom, MSW @aliciabloom

2010 National Hospice Month VideoHospice Engaging a National Participatory Audience

An example of national project made possible by connections and online collaboration to raise awareness during National Hospice Month in 2010.


AAHPM & HPNA Annual Assembly 2011

AAHPM & HPNA Annual Assembly 2011Hospice Engaging a National Participatory Audience


AAHPM & HPNA Annual Assembly 2011

Other Hospice Tweets on Social MediaHospice Engaging a National Participatory Audience

CEO, BeMoRe [email protected] @rfberry

Executive Director, What Matters [email protected]@vcb

National Hospice and Palliative Care Organization’s 27th Management and Leadership ConferenceSaturday March 31, 2012 11:45am - 12:45pm (Session 12D)

A dvocating for H ospice Online

Renee Berry Vanessa Callison-Burch

A H

Questions?






advocating for hospice online

Health & Medicine