what next? answering the question of life after chemotherapy at memorial sloan kettering

Joe Gray / Julia Lyoo / Nikhil Mathew / Jessica StriebichID538 Service Design // Fall 2009

Answering the question of life after chemotherapy at MSK Brooklyn.

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

Introduction

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.

The end of chemotherapy marks the beginning of a new phase of

uncertainty in the life of a cancer survivor.

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.

Memorial Sloan-Kettering Brooklyn is poised to deliver fully integrated

psychosocial care continuing well into life after chemotherapy.

Capabilities

Precursors

software

journaling

social media

Plenty of resources exist.

But active management and continuity of

psychosocial care is largely lacking.

Nurses observed that patients often felt abandoned or “cut loose” following their treatment and were often uncertain and anxious about what was going to happen next and who should be seen for various aspects of their care. Emotional care is mostly improvised.4

The support groups and resources are out there, but providers rarely have the time and resources to talk with cancer patients about their emotional needs during care and to help prepare them for life after treatment.2

Social workers have been at the helm of psychosocial care in oncology for over 100 years. Yet, much needs to be done to better connect patients to the many available community resources. 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

Primary and secondary research with healthcare providers and survivors revealed this pervasive issue:

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

The Problem

We envison a service that codifi es collection and analysis of a

patient’s emotions and ambitions during treatment.

The Solution

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.

Meet Brooke

Diagnosed with Breast Cancer at Age 29.

She has just begun chemotherapy following mastectomy.

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:

Brooke’s Outlook

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 I be able to have a child after chemotherapy? Is there anything I should be doing or researching now to ensure fertility?

Will potential new employers be turned off by my pre-existing condition?

How long will it take for my energy level to improve? I’d really like to take some evening classes.

Day 1 at MSK

Tour of MSK

Meet MSK Staff

Introduction to WhatNext

Sharewhat you wantwhen you wanthow you want.

Sign up at whatnext.com

Sounds like this might help me with my outlook. How do I sign up?

Data Collection

How to Share

Text input directly on whatnext.com

Aggregation API, Twitter, Facebook, RSS

Handwriting (Play Book) kept in the Empathy Lounge

Voice transcription mobile phone applications

Who to Share with

Private just myself

WhatNext community other patients and survivors

Medical Staff MSK, Oncologist, GP

Mentor From MSK survivorship network

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.

Play Book

The WhatNext Play Book is a tool for patients to keep track of:

medical information

emotions and ambitions

moments of inspiration emotions / thoughts & dreams / medical

I’ve got enough to keep track of. Help me keep it all together.

whatnext.com

home profi le match

I feel...

It’s easy to enter what I’m feeling and see that I’m not alone.

whatnext.com

home profi le match

Woman

Single

Share with medical staff & mentor

Share with medical staff only

Keep it private



general cancer track

Sync with other services?username password

Here’s where I can personalize my profi le on the website to fi nd others like me.

whatnext.com

home


Keep it private


Not at all Yes it did A lot

profi le match


Here’s where I can personalize my profi le on the website to fi nd others like me.

whatnext.com

home profi le match


emotionally

physically

Seeing my ups and downs helps me see patterns and plan ahead.

home profi le match

How much does this matters to you?

Doesn’t matter at all Yes it matters Must be





whatnext.com

This will help me fi nd the right mentor.

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.

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.

WhatNext HuddleI’m glad I have the big picture to help me move forward and to share with my continuing care providers.

WhatNext HuddleFollowing my course of chemotherapy, I meet with my oncology nurse and mentor to take a look back and discuss my needs going forward.

Outcome of the Huddle

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.

What issues might I run into with fertility after chemotherapy? Should I see a specialist? What questions should I ask him or her?


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.

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?


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.

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?

Continued Care

Near Term: 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.

Even though my life was derailed by cancer, WhatNext is helping me get back on track.

Future Vision

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.

Long-term aggregation of cancer patient psychosocial data will be of

significant value to medical researchers.

Questions? Comments?

Joe Gray / Julia Lyoo / Nikhil Mathew / Jessica StriebichID538 Service Design // Fall 2009

Appendix & References

Appendix & References

Service Blueprint

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: Willingness of patients to opt in to WhatNext

Continued use of WhatNext over the course of treatment

Dedication of medical staff toward including WhatNext in current care routines

Clarity of psychosocial data output

Accuracy of survivor network matching algorithm (will need to fine tune over time)

Resources needed: Training of MSK Brooklyn staff on using WhatNext,

orienting patients

Training of survivorship network on WhatNext

Survivorship network profiles

Capital for website development (smartphone apps to be developed later)

Web development team for WhatNext.com

Space, materials, and contractor for creating empathy lounge

Graphic designer and printing services for WhatNext print media

Measuring the results: Short-term: WhatNext opt-in by staff and patients

Mid-term: Continued usage of WhatNext; Web analytics; survey feedback on whatnext.com

Long-term: Number of WhatNext patients who join the survivor network; other cancer centers in implementing WhatNext

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.

Next steps:Improvements to the program will be iterative throughout the six-month test. Website improvements will be made as web analytics and site surveys reveal issues that need to be addressed. After completion of the test, a survey will be administered to participating patients and MSK Brooklyn medical staff to understand reactions to the program.

Pilot Plan

Mood Board

it’s about living, it’s not about surviving

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/

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

Sources

Blogs & OtherFlickr 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/

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/

Sources