A service design concept providing continuity of psychosocial care for chemotherapy patients at Memorial Sloan Kettering Cancer Center. Service Design Seminar, IIT Institute of Design, Chicago. Taught by Mark Jones of IDEO. Team members: Jessica Striebich, Nikhil Mathew, Joe Gray, and Julia Lyoo.
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What Next? Answering the question of life after chemotherapy at Memorial Sloan Kettering
1. Answering the question of life after chemotherapy at MSK Brooklyn.
ID538 Service Design // Fall 2009 Joe Gray / Julia Lyoo / Nikhil Mathew / Jessica Striebich
2. For over six months, I was a warrior. From one
infusion to the next, there was always another
battle. Then came the end of chemotherapy.
Driving home from my last appointment, I had
to pull over. I was having a panic attack. What
next? I was now a warrior without a war. It
was just me. And the rest of my life.
—Joan, Cancer Survivor
3. Introduction
The end of chemotherapy marks the beginning of a new phase of
uncertainty in the life of a cancer survivor.
The final infusion in a chemotherapy patient’s course of
treatment should be cause for celebration. Yet for many, it
marks the beginning of life with new fears, anxieties and a
struggle to adjust to a “new normal.”
This is particularly prominent among younger cancer
patients for whom treatment has momentarily derailed
their life ambitions, just as they are in the throes of starting
careers and families.
While cancer treatment has evolved extensively in recent
decades, there are many opportunities to improve patient
quality of life following chemotherapy. This initiative
focuses on creating a service solution for cancer patients
facing the question of life after chemotherapy.
4. Capabilities
Memorial Sloan-Kettering Brooklyn is poised to deliver fully integrated
psychosocial care continuing well into life after chemotherapy.
Memorial Sloan-Kettering provides
extensive help for life after
chemotherapy through survivorship
resources accessible on the MSK
website and through printed media
We recommend these resources be
made a much more integral aspect of
care during and following course of
treatment.
6. The Problem
Plenty of resources exist.
But active management and continuity of Social workers have been at the
helm of psychosocial care in
oncology for over 100 years. Yet,
psychosocial care is largely lacking. much needs to be done to better
connect patients to the many
Primary and secondary research with healthcare providers available community resources.
and survivors revealed this pervasive issue: When budget cuts hit a health
care facility, oncology social
workers are often one of the first
professions to be cut.3
Psychosocial interventions are effective but underused
for many reasons, including stigma and lack of
knowledge on the part of health care professionals.1
Nurses observed that patients often felt abandoned
The support groups and or “cut loose” following their treatment and were
resources are out there, but often uncertain and anxious about what was going
providers rarely have the time to happen next and who should be seen for various
and resources to talk with cancer aspects of their care. Emotional care is mostly
patients about their emotional improvised.4
needs during care and to
help prepare them for life after
treatment.2
1 Meeting Psychosocial Needs of Women with Breast Cancer, IOM, 2004.
2 Implementing Cancer Survivorship Care Planning http://www.nap.edu.
3 Ibid.
4 Interview with Jeanne Gray, RN MSNC OB/GYN
7. The Solution
We envison a service that codifies collection and analysis of a
patient’s emotions and ambitions during treatment.
8. The Solution
We envison a service that codifies collection and analysis of a
patient’s emotions and ambitions during treatment.
9. The Service
Introducing WhatNext. WhatNext is a psychosocial care
service that integrates collection
and analysis of a patients’ emotions,
ambitions and psychographics during
chemotherapy in order to provide
continuous, robust psychosocial care
following course of treatment.
10. Meet Brooke
Diagnosed with Breast Cancer at Age 29.
She has just begun chemotherapy following mastectomy.
11. Brooke’s Outlook
Ambitions:
Cancer is a career “wake up call” -- Brooke is now considering a new career direction.
Brooke is thinking of enrolling in a part-time graduate degree program.
She plans to start a family within next 2-3 years.
Anxieties:
I’m not sure a traditional support group is right for me.
How can I find a few people who are roughly my age
and have ambitions like me?
Will potential new
How long will it take for my employers be turned off by
energy level to improve? my pre-existing condition?
I’d really like to take some
evening classes.
Will I be able to have a child after chemotherapy?
Is there anything I should be doing or researching
now to ensure fertility?
12. Day 1 at MSK
Tour of MSK
Meet MSK Staff
Introduction to WhatNext
Sounds like this might
help me with my outlook.
How do I sign up?
Share
what you want
when you want
how you want.
Sign up at whatnext.com
13. Data Collection
Patients can choose from a variety of input methods and decide who
has access to their data.
How do I enter my feelings
and ambitions? I want it to
effortlessly fit into my life.
Who to Share with How to Share
Private Text input
just myself directly on whatnext.com
WhatNext community Aggregation
other patients and survivors API, Twitter, Facebook, RSS
Medical Staff Handwriting (Play Book)
MSK, Oncologist, GP kept in the Empathy Lounge
Mentor Voice transcription
From MSK survivorship network mobile phone applications
14. Play Book
The WhatNext Play Book is a tool for patients to keep track of:
medical information I’ve got enough to keep track of.
Help me keep it all together.
emotions and ambitions
emotions / thoughts & dreams / medical
moments of inspiration
15. whatnext.com
It’s easy to enter what I’m feeling
home profile match and see that I’m not alone.
I feel...
16. whatnext.com
home profile match
Here’s where I can personalize my profile
on the website to find others like me.
general cancer track
Keep it private
Share with medical staff only
Woman Share with medical staff & mentor
Share with medical staff & mentor
Single Share with medical staff & mentor
username password
Sync with other services?
17. whatnext.com
home profile match
Here’s where I can personalize my profile
on the website to find others like me.
general cancer track
Keep it private
Share with medical staff & mentor
Share with medical staff & mentor
Not at all Yes it did A lot
18. whatnext.com
home profile match
Seeing my ups and downs helps
me see patterns and plan ahead.
general cancer track
emotionally
physically
19. whatnext.com
home profile match
This will help me find
the right mentor.
How much does this matters to you?
Doesn’t matter at all Yes it matters Must be
How much does this matters to you?
Doesn’t matter at all Yes it matters Must be
How much does this matters to you?
Doesn’t matter at all Yes it matters Must be
20. WhatNext at Home
When I can’t muster the energy to get off
the couch, I can simply enter my feelings
into the WhatNext iPhone app.
21. Empathy Lounge
During visits to MSK Brooklyn, I can talk with
others and interact with what others have written
about their feelings and ambitions. I can browse re-prints of past
patients’ play books to see their
emotion and ambition journeys.
22. WhatNext Huddle
I’m glad I have the big picture to
help me move forward and to share
with my continuing care providers.
23. WhatNext Huddle
Following my course of chemotherapy, I meet
with my oncology nurse and mentor to take a
look back and discuss my needs going forward.
24. Outcome of the Huddle
What issues might I run into with fertility after
chemotherapy? Should I see a specialist? What
questions should I ask him or her?
Having been matched with a mentor who also wanted
to have children following chemotherapy, Brooke feels
comfortable discussing these concerns. Brooke’s Mentor
works with Brooke’s nurse to arrange a referral to a
physician with expertise in fertility following chemotherapy
and helps Brooke create a list of questions for the
physician. When Brooke visits the physician, she will
easily be able to share her chemotherapy treatment
details and emotional journey via her WhatNext Playbook
and USB drive.
25. Outcome of the Huddle
I’m going to start searching for jobs on my new career
path as a high school guidance counselor. What do
I need to know about insurance issues as I transition
from one employer to the next? Will a new employer
be concerned with my pre-existing condition?
Since Brooke’s mentor also experienced a career “wake
up call” following diagnosis, Brooke is ensured her mentor
will be able to guide her to the right resources. Brooke
also taps into the WhatNext online community to network
with cancer survivors who can give her advice on her new
career path in education.
26. Outcome of the Huddle
I’m interested in becoming an MSK mentor
myself. I’d also like to set up some social events
and fundraisers for cancer survivors my age.
How do I stay involved?
Throughout her treatment, Brooke has made deeply
emotional connections with several cancer survivors her
age via the WhatNext online community. Since she’d like
to further nurture these friendships and help others like
her, her mentor directs her to the MSK mentor training
program and puts her in touch with the MSK coordinator
of events and fundraising.
27. Continued Care
Even though my life was Near Term:
derailed by cancer, WhatNext is
helping me get back on track.
Brooke’s mentor, providers and the WhatNext profile
point her to services, groups, and resources
applicable to her.
She continues to use WhatNext.
Long Term:
It’s always there for her. Even though she’s done
with treatment (for now), she may not be done with
cancer.
Brooke joins the MSK survivorship network
Brooke becomes a mentor to a patient going
through treatment.
28. Future Vision
Long-term aggregation of cancer patient psychosocial data will be of
significant value to medical researchers.
We envision the WhatNext plaftorm
as a branded solution that can be
offered to other medical institutions. In
this scenario, MSK would continue to
aggregate psychosocial patient data
from across a network of providers
using the WhatNext platform. MSK
would be positioned to provide medical
researchers and pharmaceutical
companies with subscription access
to an unprecedented depth of
psychosocial cancer patient data.
32. Pilot Plan
We will test the WhatNext service over a six-month period with patients ages 20-40 who are beginning chemotherapy
at MSK Brooklyn. Participants will be recruited to opt-in during their MSK Brooklyn orientation. Feedback on the beta
version of the program will be collected via user surveys of participants and medical providers on the WhatNext website.
Assumptions to be tested: Resources needed:
Willingness of patients to opt in to WhatNext Training of MSK Brooklyn staff on using WhatNext,
orienting patients
Continued use of WhatNext over the course of
treatment Training of survivorship network on WhatNext
Dedication of medical staff toward including WhatNext Survivorship network profiles
in current care routines
Capital for website development (smartphone apps to
Clarity of psychosocial data output be developed later)
Accuracy of survivor network matching algorithm (will Web development team for WhatNext.com
need to fine tune over time)
Space, materials, and contractor for creating empathy
lounge
Graphic designer and printing services for WhatNext
print media
33. Pilot Plan
Measuring the results: Next steps:
Short-term: WhatNext opt-in by staff and patients Improvements to the program will be iterative throughout
the six-month test. Website improvements will be made
Mid-term: Continued usage of WhatNext; Web as web analytics and site surveys reveal issues that need
analytics; survey feedback on whatnext.com to be addressed. After completion of the test, a survey
Long-term: Number of WhatNext patients who join the will be administered to participating patients and MSK
survivor network; other cancer centers in implementing Brooklyn medical staff to understand reactions to the
WhatNext program.
Insights learned through test:
We will glean an understanding of the degree of emotional
data WhatNext participants are willing to input. We will
also learn how we can keep patients engaged and
incentivized over the course of treatment, as we need to
ensure continued participation over time.
35. Sources
General / Current Landscape:
MSK Post-Treatment Resource Program
http://www.mskcc.org/mskcc/html/19409.cfm
NCCS Cancer Survival Toolbox: Living Beyond Cancer
http://www.canceradvocacy.org/toolbox/11-living-beyond-cancer/
Advocate for young and adolescent cancer patients
http://seventyk.org/
Everything Changes: The Most Comprehensive Book Available On Cancer in Your 20s and 30s
http://everythingchangesbook.com/
I’m Too Young For This! Cancer Foundation :: The Voice of Young Adults
http://i2y.com/
Young Survival Coalition
http://www.youngsurvival.org/
LiveStrong Care Plan
http://www.livestrongcareplan.org/
Journey Forward: Survivorship Care Planning based on ASCO templates & guidelines
http://www.journeyforward.org/
Inspire - together we’re better
http://www.inspire.com/
36. Sources
Legislation:
NCCS What Is Comprehensive Cancer Care? (The Comprehensive Cancer Care Improvement Act)
http://www.canceradvocacy.org/take-action/nccs-policy/comprehensive.html
Academic / Scientific Sources:
“Cancer survivors’ experience of time – time disruption and time appropriation”
Building a Bridge of Continued Care for Cancer Survivors
http://jop.ascopubs.org/cgi/content/full/2/2/77
From Cancer Patient to Cancer Survivor: Lost in Translation
http://books.nap.edu/openbook.php?record_id=11468
Implementing Cancer Survivorship Care Planning
http://www.nap.edu/catalog/11739.html
Video and Audio:
Young Peoplel Living, and Laughing, with Cancer
http://www.npr.org/templates/rundowns/rundown.php?prgId=13&prgDate=9-8-2009
Service Design Jeanne Gray Interview (Joe’s interview video)
http://www.vimeo.com/7324039
37. Sources
Blogs & Other
Flickr Photostream (jennifrog)
http://www.flickr.com/photos/jennifrog
Q&A: Iva Skoch on Cancertainment
http://blog.newsweek.com/blogs/thehumancondition/archive/2009/07/31/q-a-iva-skoch-on-cancertainment.aspx
An Inconvenient Tumor... but aren’t they all?
http://aninconvenienttumor.posterous.com/
Cancer is Hilarious.
http://cancerisnotfunny.blogspot.com/
I made Cancer “MY BITCH!”
http://igotthecancer.blogspot.com/
My Blood Hates Me
http://hatefulblood.blogspot.com/
what’s up your butt?
http://shortcolon.blogspot.com/
Kiss My Bald Head
http://www.kissmybaldhead.com/
I’ve Still Got Both My Nuts: A True Cancer Blog
http://benjaminrubenstein.blogspot.com/
38. Sources
Voices of Pancreatic Cancer
http://well.blogs.nytimes.com/2008/09/18/voices-of-pancreatic-cancer/
Voices of Prostate Cancer
http://well.blogs.nytimes.com/2008/06/26/voices-of-prostate-cancer/
Voices of Lung Cancer
http://well.blogs.nytimes.com/2009/04/22/voices-of-lung-cancer/