What Next? Answering the question of life after chemotherapy at Memorial Sloan Kettering

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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 …

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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  • 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.
  • 5. Precursors software journaling social media
  • 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.
  • 29. Questions? Comments? ID538 Service Design // Fall 2009 Joe Gray / Julia Lyoo / Nikhil Mathew / Jessica Striebich
  • 30. Appendix & References Appendix & References
  • 31. Service Blueprint
  • 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.
  • 34. Mood Board it’s about living, it’s not about surviving
  • 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/