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ARK Community Wellness Programs, the Community Conversation Nurse & 12 Month Mortality Calendar of community events (UX Maps added 8/5/16)

Protyping a business model of a Community Conversation Nurse as a change agent to re-imagine the end-of-life experiences in my community!

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Who is your idea designed for and how does it reimagine the end-of-life experience?

Resources designed with the entire community in mind, at any stage of life, with respect for all cultural and geopolitical beliefs, reaching individuals where they work, eat, study and worship. Easy access, user friendly calendar of community Death Over Dinner events at local colleges or business districts, workshops for clergy and faithful to develop comfort with Conversation Sabbath messages & corporate workshops as an employee benefit! Or attend a NHDD or POLST event at a local nursing home.

I've been "raised" in the homes of hospice families as a nurse for 30 years, and my passion is to empower their voices. I've been an advocate for each unique end-of-life experience communicated and have been blessed a billion times over. I've been frustrated over the years by the medical world's lack of focus on Advance Care Planning and the millions of ways communication could have lightened the burden for countless souls. I'm building ARK Community Wellness Programs to combine annual Medicare Wellness Visits with annual Advance Care Planning sessions, and host community EOL events and workshops! Together we can change the world one Conversation and one Act of Random Kindness (ARK) at a time!

ARK Community Wellness Programs will develop and  facilitate a revolving 12 Month Mortality Calendar cycle, employing Community Conversation Nurses and utilizing the fabulous resources that already exist:

Being Mortal, Conversation Sabbath, Death Over Dinner, National Healthcare Decisions Day, National POLST ParadigmThe Conversation Project and GA Health Decisions Critical Conditions Planning Guide can all be combined in a cyclical 12 month event calendar something like this:

Approximately once a week, the Community Conversation Nurse would have a lunch and learn for MD office staff, Dialysis Centers, Surgical Centers, health departments, civic groups or church group to introduce them to how easy it is to begin to express end-of-life wishes with the Advance Care Planning resources available. Sponsorship for these lunch and learns (and the larger monthly events) will be offered to hospices, Medicare Advantage plans and other organizations who want to be change agents as well. Then, in addition to these routine workshops for healthcare professionals, we would also host monthly events, however small or large possible:

JanuaryDeath Over Dinner fun social events to bring in the New Year! Colleges, public health departments, corporate employee wellness workshops, etc...

February – Host special events to Give the Gift of Advance Care Planning to your loved one’s for Valentine’s Day! Host workshops or Death Over Dessert events in cafeterias of hospitals, assisted living and skilled nursing facilities. Tailor the event to the wishes of the event organizer, utilizing The Conversation Project Starter Kits, Being Mortal documentary showings, POLST, Critical Conditions workbooks, etc.

March – plan for National Healthcare Decisions Day or a Death Over Dinner Community event like Don't Leave Your Death to Luck... Re-imagine how you would want to spend your last days! Definitely need help re-imagining that event name!! LOL)

AprilNational Healthcare Decisions Day (because the 2 things we can’t avoid are death and taxes). Host community workshops to educate, advocate and complete Advance Directives and POLST forms. Heavily involve health departments and other local govt agencies.

May – plan for Alzheimer’s and Brain Awareness month or Give the Gift of Advance Care Planning for Mother's Day

June – Give the gift of Advance Care Planning this Father's Day!  or Coordinate with local Alzheimer’s Association events to host sessions advocating The Conversation Project Starter Kit for Alzheimer’s and other Dementias. June is Alzheimer's and Brain Awareness Month. Join community events to educate, advocate and complete Advance Directives and POLST forms

July – Death Over Dinner fun social events and staff lunches at physician offices or "Declare Your Wish to be Independent - Write Your Advance Directives!" 4th of July Events

August – Death Over Dinner fun social events and staff lunches at physician offices or empty nesters who send their kids off to college

September – plan for Conversation Sabbath with workshops to educate and empower clergy and leaders. Labor Day events?

October – plan for Conversation Sabbath with workshops to educate and empower clergy and leaders. Day of the Dead or All Souls or Fall Harvest event themes.

NovemberConversation Sabbath (across all faith communities and in hospital chapels and long term care facility ministries) Host community workshops to educate, advocate and complete Advance Directives and POLST forms. Focus on gratitude and the gift of conversation!!

December – Death over Dessert – fun Holiday Events such as “You Can’t Have Pie Until You Tell Me How You Want To Die!”

Then we do it all over again!!!

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

My "experiments" were conversations with patients at their Medicare Annual Wellness visits at a Family Practice office and a Survey Monkey post on my Facebook site. The responses are 50-50. Those that have not addressed this part of their lives are eager for the information I provide! The office now has plans to renovate to build a Wellness Center to include end-of-life info and support. The individuals and families who have had these conversations are encouraged to refine and add detail!!

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

Grateful for this opportunity to have input and guidance from the OpenIDEO community to this newbie! During the challenge, my whole family has moved through various stages of mourning from concurrent losses and my contribution was limited. But now that I have participated in and witnessed the many wonderful concepts being tested in Refinement, the whole process of prototyping has been opened up to me! I LOVE OpenIDEO and look forward to participating with the IDEO's selected for the next phase!

Tell us about your work experience:

30 years as a hospice RN, 3 years in Medicare Wellness! ARK Community Wellness Programs was" born" to help the medical world to embrace end-of-life, as naturally as we embrace wellness, by starting with patient empowerment. Together we can change the world one Act of Random Kindness at a time (ARK)

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Out of my head and into OpenIDEO.docx

This is the narrative I hear in my head when I am developing the 12 Month Mortality Calendar for the OpenIDEO refinement phase. Thanks to the storyboard portion of mapping the user experience on the Sticky Notes - User Experience Map- Prototyping - Research and metrics, etc , I am closer to the roll-out of this challenge than ever before. I've been discussing advance care planning with my colleagues for years, and hear a great need for support and information. Welcome input from all!


Join the conversation:

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Formal training programs at nursing homes for staff and patients and families might be able to be funded with Civil Monetary Penalty (CMP) funds from compliance fines. Any advice or help with Grant Writing/Applications to CMP from the OpenIDEO team would be appreciated!
As I have worked this week, building the Medicare Annual Wellness program at a local Primary Care Physicians office, I am reminded how many opportunities the medical world is missing without these critical conversations to help re-imagine the end-of-life experience. I am excited to begin to bring workshops to doctor's offices to raise the comfort level of healthcare providers in discussing what matters most to their patients in their health and in their death. And I'm excited to help physicians begin to embrace the new billing code so they can be reimbursed for time spent on appointments to discuss end-of-life and advance care planning (ACP).
Many consumers aren't aware of the new bundled payments and penalties for unnecessary re-admissions to hospitals from nursing homes or home health, so I anticipate the trend will be for for more meaningful conversations about goals for care that align with what matters most to the patients and families. If more  conversations occur, combined with training of staff about advance directives, the likely result will be fewer knee-jerk transfers from nursing homes to hospitals for concerns that could be treated comfortably in place. I'm excited to be a change agent by helping patients and families have these conversations often.
My only other "update" and observation for the week would be to donate the time and supplies once a month for a free workshop at local libraries or Senior Centers, and get on their community calendars as well. Also funeral homes may be interested in reaching out to the community as locations for workshops for the public.

Photo of Amy Holliday

I just want to thank the entire OpenIDEO team and Challenge participants for this journey!! This idea has been swirling around in my head for over a year. I've been to Small Business Development classes, Digital Marketing classes, hired a webmaster,  yet it seems like I have writer's block and NOTHING could really get it onto paper in a usable form .....until I encountered the UX Map!
Then I looked at all the professionally done challenge opportunities and ALMOST gave up on completing the challenge myself since I hadn't built an OpenIDEO team and was far from the achievements of others. HOWEVER, I made myself sit down an put my ideas into simple images and simple words, and suddenly the whole concept of the business plan jumped from my head to the Post-It notes!!
I was able to envision a series of "friendly handshakes" between caregivers/patients and the complicated healthcare system of managed care in the US. Instead of all the End-of-Life resources competing, they are collaborating to meet the needs of the patient and caregiver at the level they are at and the consumer is able to make informed choices and interact with Managed Care Providers at a more comfortable level.
When the 12 Month Mortality Calendar is implemented, the consumer will continue to hear these messages at coffee shops, college campuses, churches, health departments, and even as an employee benefit, in addition to the info she gets from the doc offices and hospitals. 
The Community Conversation Newsletter will also include brief "consumer advocate" articles about other areas that will bring interest for those not quite ready to talk end-of-life options. (I also work with physicians and public healthcare providers on their Privacy and Security (HIPAA) duties, and consult at Primary Care offices, incorporating end-of-life, depression, intensive diabetes and obesity information, and resources into Medicare Annual Wellness visits, so I will include general consumer level information about Wellness and HIPAA in the newsletter to attract the attention of other users.)
So, once again, thanks to OpenIDEO for unlocking my business plan "writer's block" with the UX Maps!!
ARK Community Wellness, as of today, will have 3 "arms" - 1) The Community Conversation Nurse and 12 Month Mortality Calendar, 2) The Community Wellness Nurse with resources for patients and docs about end-of-life, diabetes, obesity , smoking cessation, depression for prevention (and of course to help docs meet quality reporting metrics)  and 3) The Community Privacy Nurse with consumer advocacy information to help ensure they choose providers who have active HIPAA Compliance Programs to secure Protected Health Information (PHI). 
The tagline for ARK Community Wellness is "Together we can change the world one Act of Random Kindness at a time!" and this sums up the entire consumer experience and "handshakes" between patients/caregivers and the Managed Care Providers (in the US) at all the different levels. By respecting individuals at the level they are currently at, and being grateful for the acceptance of me by others, we can celebrate our unique stories and create a user experience that will help re-imagine the end-of-life experience, hopefully long before our end time is near.
As the plan progresses, I may try to incorporate a similar UX Map into end-of-life planning discussions now that I have seen the rewards of the experience!! If I can help even one other person re-imagine their end-of-life story, knowing that they can change the direction of their plan and imagine something new as easily as moving a Post-It note from one place to another, then I will have succeeded. Multiply that one newly empowered and newly informed individual by the thousands we can reach, and "Together we can change the world one Act of Random Kindness (ARK) at a time!" 
I left my full-time hospice nursing job 1 1/2 years ago to pursue the dream of re-imagining the end-of-life experience. I work from home now (making just enough to survive!!) as I develop ARK Community Wellness and HIPAA clients across the country. The HIPAA consulting has taken center stage with all the new ransomware attacks that threaten our data at our doctor's offices, but now, THANKS TO THIS CHALLENGE, I have a better vision of how to move forward with all of the connections in my community that have heard me dream for over a year!
Have I said THANK YOU yet?! Thanks again!!
Next time I work with OpenIDEO I will understand the entire process better and be able to team up with others and contribute better to their ideas. This time I was a newbie, so thanks again for challenging me!

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Hi Amy.  I like your idea.  How about having workshops / events within corporate wellness departments?  Where would this fit on a yearly calendar?  

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Thank you, Bettina! Outreach to corporations wellness could be incorporated easily throughout the year as best fits their schedule, or possibly in the period just before annual open enrollment. I've thought about getting in touch with the major Medicare Advantage plan providers to help their Wellness providers as well! Do you have any additional thoughts?

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Can events be tagged to known holidays or times of the year?  I think people associate certain things with dates/seasons. The Valentine's event that you have planned is a great example.   
Maybe events can be held in a corporate wellness center monthly, or seasonally, (depending on the size of the corporation), and employees who have birthdays that month, or season, can be invited - a gift of peace of mind - or something like that?

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Again, great ideas, Bettina! Getting into the corporate wellness, and "gifting" and advance care planning discussions for peace of mind would help reach people from all age ranges, and those that wouldn't typically sign up for workshops yet, but would get the conversation going!
As for the holidays, I've thought about that over and over, but I just know how full our calendars get between November and December, so I thought Conversation Sabbath f/u would include those holidays, but the rest of the year your idea might be easily incorporated into the themes for the monthly Death Over Dinner... New Years, Valentines, Lucky Irish, April Foll's, Mother's Day, Memorial Day, Father's Day, Independence Day, Summer/Vacations, Labor Day, Fall Harvest/Halloween, and back to Conversation Sabbath community events that will focus on gifts of advance care planning and gratitude  THANK YOU!

Photo of Bettina Fliegel

I like how discussions in corporate wellness centers will reach people of all ages.  What hook is there to bring this conversation to college age youth, on campuses?  How does it fit onto a school calendar?  It might be interesting to speak to some college students to brainstorm this.  

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Bettina, I've incorporated some your ideas into the calendar! I have a son at UGA and will pursue the input of college students with his help. One of the OpenIDEO contributers addresses a school program, and I will continue to follow and hopefully coordinate resources with many of the challenge participants. Thanks for your input and I will continue to refine with additional directions generated from your input after the challenge is over! Now all that's left is putting it into action! I have hired a web designer to begin work on the web-page for ARK Community Wellness Programs and with your input, I have more ideas and areas to incorporate! I am in the process of ordering the workbooks that have end-of-life scenarios at the beginning to prompt discussion about feeding tubes and ventilators, etc and the back section has an Advance Directive for those who are ready to complete a document. The workbook includes perforated wallet cards to put in your wallet to alert EMS you have a healthcare agent and an advance directive. My goal is to have a community wide kick-off for Conversation Sabbath in November, then work the 12 Month Mortality Calendar of events from that point on. Most of the workshops at MD offices will be to inform staff of the resources they can refer their patients to for more information, since docs always say they "don't have time". I am watching the culture change at the Family Practice office I work at 2 days a week, as the docs and PA's listen to my conversations about expressing wishes for end-of-life care at the Medicare Wellness Visits. After the OpenIDEO challenge, I plan to be a change agent in my community and be a part of the re-imagining end-of-life experiences and starting a cultural shift in the medical world by starting with the patients and the community, who will bring it back to their doctors and tell them what is important in their care! THANK YOU again!

Photo of Amy Holliday

Your input also put me in the direction of public health departments and clinics, and other govt agencies that might want this information for their employees and patrons as well!

Photo of Bettina Fliegel

This sounds great!  I am happy that my input was useful!  I like the way you are laying out the events for each month.   I like the idea of events on college campuses built into their calendar in a way that resonates with them.  It might create opportunities for those who have had losses to meet others, build community etc.  
Regarding docs not having time, in my opinion I think it is important that they know if their patient has completed an advanced planning directive.  Maybe there can be a campaign on the calendar about patients scheduling a follow up with their doctor if they do complete a directive.  A visit to review it and have the time to then ask questions that they have about it - a clarifying session.  The patient can drive the conversation with something in hand?  How might that work into a calendar?  (not sure it does, just thinking…..)
I think getting into the community and public health sector is a great idea.  I used to work at a Federally Qualified Community Health Center.  I think that bringing the workbook and calendar idea to these centers is a great idea.  They often are very well respected by the communities they serve and may have health education events for patients.  Another place to look into are social service agencies that have VNS as part of their services.  They might also have preventive programming within their centers.  Again, places that might embrace the calendar.  Might they  modify it to the cultural calendar of the communities they are serving?

There are many ideas on this challenge that might overlap your overall approach here.  One is an idea that is creating comics as conversation starters.  Have you considered using a comic scenario for the beginning of your workbook?
Another cool idea that I can see on a local calendar is the Living Well After Listening Tour.

If you have time to create a user experience map, or create another flow chart like above, it would be great to see how this plays out for a community and a a person -  from how each learns about events  - to when someone puts that card in their wallet.  (Were you on the telephone call with OpenIDEO earlier in the week?  Refinement officially ends tonight but they said we can keep working until Thursday when judges will start to look at the posts.   I have a post in refinement and am happy to have some extra time to finish writing something up…..)

I checked out the ARK Wellness Programs Facebook page.  It has great posts about EOL things.  The post about the woman who was taken to the beach for her bucket wish list was beautiful.  Was that in your community?   (What does ARK stand for? )

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ARK stands for "Acts of Random Kindness... Together we can change the world one Act of Random Kindness at a time."
Thank you for all the input! I was on the 1st call but couldn't make the call this week, and was wishing I could have created a user experience map,  and link to other Ideos that inspired me, but simply ran out of time. I will look at your ideas, and the ones you linked, tonight!
I love the comics idea... part of my marketing/advocate work will be to produce a newsletter to distribute, and when I started to draw the experience map, remembered the contribution about end-of'life comics.
ARK's Facebook page has been largely inactive as I juggle working as a HIPAA advocate and consultant for healthcare providers while starting ARK Community Wellness. Eventually the plan for ARK is to have 3 "arms" - Community Conversation Nurse for end-of-life resources, Wellness Nurse for resources related to Annual Medicare Wellness collaboration, and the Privacy Nurse to advocate and education people on what to expect of their providers regarding the privacy and Security of their protected healthcare information.
As a matter of fact, I need to get back to some HIPAA work right now, but will be back on tonight to interact some more. Great to get to know you in this forum! And Good to know to we can continue to work until Thursday! Talk again soon!

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Welcome to the refinement phase Amy! Here are some key questions and milestones we encourage from all ideas in the Refinement:

1. How might this idea address the unique needs of the target audience you're designing for?
2. Clearly summarize the value offering of your idea in 1-2 sentences
3. Communicate your idea in a visual way with user experience maps
4. Identify assumptions that need to be answered in order to validate your value offering:
5. Collect feedback from potential partners and users to answer the assumptions you’ve identified.

Lastly, here's a useful tip: When you update the content of your post, it'd be helpful to indicate this in your idea title by adding an extension. For example, you can add the extension " - Update: Experience Maps 07/12" to you idea title. This will be a good way to keep people informed about how your idea is progressing!

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Thank you to the entire OpenIDEO Team and participants for the opportunity to participate and learn from you all in the challenge to re-imagine the end-of-life experience! LOVE the way collaboration unfolds and eager to participate with the great ideas that move to the next phase!

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Hi Amy! Such a cool idea - thanks for sharing. I love the image you chose and your caption. Especially "families caring for a loved one at their end of life are in the middle of other stages of life themselves." What if there was a singular event that addressed mortality, catered to each stage depicted in the image?

Photo of Amy Holliday

Joanna, I would LOVE to incorporate all the life stages into our events. One of my colleagues is a pediatrician and hospice physician who consults with pediatric hospice cases across Georgia. Once we get this event cycle moving, I envision one natural outcome of a 12 month mortality calendar to applaud and amplify the Pediatric Conversation Starter Kit from The Conversation Project for families that are faced with young ones being ill. As we move across the life span, we have 20 - 40 yr olds to engage with the trendy Death Over Dinner End-of-Life Awareness events. For the boomers and the sandwich generation, caring for children, grandchildren, parents and grandparents is REAL. Helping them with understand what their parents want before an emergency arises, will ease some of the stress when, not if, an emergency does arise. National Healthcare Decisions Day is PERFECTLY spaced the day after taxes are due to catch the attention of a large group of middle-aged demographics.  I am living the sandwich generation daily and draw on the critical conversations I had with my family to help make healthcare decisions. Then there are the widowed, country farm men who "would rather die out in the field on the tractor than ever be hooked up to any machines". Having a POLST document would be most appropriate for the 88 year old widower above, who simply doesn't want 911 called or CPR or a ventilator if found dead on his land. And all the residents of assisted living and nursing homes should feel comfortable discussing what matters most to them in an emergency as they are talking about their lunch menu. I want people to understand these documents take nothing away from you. They allow you to determine the type of care you receive in an emergency or at end of life. (My Advance Directive clearly requests that my face is washed every day if I can't speak for myself. No one else would know, but I know that I have such oily skin that I would feel as if I was suffocating if my face was not washed. "Washing my face and doing oral care would be appreciated daily. Thanks!") Introducing people to the writings and documentary work of Atul Gawande and continuing to collaborate with OpenIDEO contributors will continue to build the momentum across all ages/stages/lifestyles/traditions/et al.
I am grateful to participate in this challenge and regret I wasn't able to build momentum earlier. Hoping to finish strong with a human centered prototype we can can easily and quickly duplicate in communities everywhere. 

Photo of Amy Holliday

Thank you again, Joanna, for introducing me to prototyping and this entire journey with the OpenIDEO team! My contribution was very limited due to concurrent family crises and losses, but the insight and skills that I gained have been invaluable. As I press on with prototyping and refining, my goal is to be a change agent for re-imaging end-of-life experiences in communities around me!  My new small business, ARK Community Wellness programs, was founded on the principle that "Together we can change the world one Act of Random Kindness (ARK) at a time! " By making end-of-life resources available to individuals at every level of readiness, and offering a light-hearted approach where planning for end-of-life is part of living well, I am already seeing a difference! I will remain a faithful follower and contributor to future OpenIDEO challenges and help spread the word! Great to meet you and thanks again for this grand opportunity to participate in the work of this community of thinkers and do-ers!

Photo of Amy Holliday

11TH HOUR PLEA: I'm asking if any of my OpenIDEO mentors and friends could take a moment to provide reactions, positive or negative, to  The 12 Month Mortality Calendar..... I realize I am reaching out late in the game, but my family has been plowing through stages of mourning and my ability to work on this project has been haphazard. Slow but steady wins the race and I will definitely be continuing this challenge even if I don't move to the next phase officially, so I appreciate any input, even after the Refinement Phase for OpenIDEO ends.

I believe incorporating all of our resources into an annual calendar of "fun, community events" and an annual calendar of "continuing education" events at physician offices, hospitals and nursing homes (whose quality measure reporting is tied to quality advance care planning) is a Win-Win-Win. Your input would help me design excellent customer experiences and test the feasibility of the 12 Month Mortality Calendar.
If you prefer surveys, you could answer 10 questions about End-of-Life workshops at Survey Monkey?!?! 
...One step closer to re-imagining the end-of-life experience for our communities.
Thank you and thank you again! :)

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Energized and excited. Starting web design this week to get the some of the basics out of the way and looking forward to refining the 12 Month Mortality Calendar with input from the OpenIDEA team!

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Hi Amy, interesting post! Any chance you could find an image to go along with it? Images help grab attention and tell a story. You should be able to use the Edit Contribution button on the top of your post and follow the instructions to add images from there. Looking forward to seeing more of your inspiring insights on OpenIDEO.