• 23

    Backer(s)
  • $ 7,200

    pledged of $ 5,000 goal
  • 1420

    days ago
  • Funded!

    This project was successfully funded.

  • This project was successfully funded on 2013-07-06

About our project



Journey Forward is a finalist in the NCI/ONC Crowds Care 4 Cancer Challenge: Supporting Survivors. The contest will be judged on a number of factors, among the most important is “co-design” with patients and care providers. This means we really need your feedback on what we are building. Please either make comments in the comments section or email us directly. We would love to hear from you!

Journey Forward offers an innovative and interconnected suite of tools and resources to support survivorship care planning.

This project is the development of a new, interactive care planning tool called My Care Plan™ designed specifically for cancer survivors. We appreciate the support of ONC/NCI and the judges of Phase 1 of this contest and their votes of confidence! We will now build My Care Plan with your help. Please use the comments section to participate in an open discussion of ideas on how to make this tool more useful and effective in closing the gap in survivorship care.

We look forward to your feedback and thank you in advance!

Why Is a Survivorship Care Plan Important?

In a 2005 report, the Institute of Medicine (IOM) concluded that many survivors feel “lost in transition” from active treatment to survivorship. Survivors stated they had few clues about how to manage their follow-up care and many unanswered questions about the physical and mental health problems that often result from cancer treatment.

Journey Forward’s suite of survivorship care planning tools was designed to address this shortcoming in healthcare; it was designed to facilitate the coordination of care and to address the unique needs of cancer survivors.

About Journey Forward

Journey Forward is a program designed for healthcare professionals and their patients who have recently completed active treatment for cancer. This program was created by a unique collaboration of organizations with a common goal of improving survivorship care.

Journey Forward promotes and facilitates the use of Survivorship Care Plans that give clear steps for care after active treatment.

Our Survivorship Care Plan Builder is a professionally oriented tool that is currently used by thousands of oncology professionals to provide patients with the information they need to successfully make the transition to survivorship care and to manage any ongoing symptoms and concerns. It is available at no charge.

While this tool is very helpful, many oncology providers still do not provide Survivorship Care Plans to their patients for a variety of reasons. With that in mind, we are now building a complimentary, patient-oriented tool, My Care Plan, which enables patients to drive the care planning process themselves and to directly access information about follow-up care guidelines and symptom management. This is the project for which we ask your support.

Collaboration Has Driven the Development of Journey Forward and My Care Plan

Journey Forward is the result of a 6‐year, cross‐industry collaboration between patients, healthcare professionals, advocacy groups, and standards organizations.

  • Patients: By partnering with the National Coalition for Cancer Survivorship and through our advisory board, focus groups and surveys we are founded and grounded in what works for patients, first and foremost.
  • Oncologists & Researchers: Oncologists and researchers have been engaged in our mission from the beginning, participating in our advisory board and focus groups, and helping implement a collaborative model of healthcare. We have co-designed our solution to meet the needs of healthcare professionals by working with leading medical institutions like the UCLA Survivorship Center.
  • Nurses: As any patient knows, nurses are critical to the care journey. Through a partnership with the Oncology Nursing Society, one‐on‐one interviews, and participation in ONS‐led educational workshops, events, our advisory board and focus groups, nurses have been valued partners in designing Journey Forward.
  • Industry Partners: By working in partnership with Genentech and WellPoint, Journey Forward has kept in focus the overall goal of keeping patients healthier and happier through better care coordination.

Closing the Gap in Care Through My Care Plan

My Care Plan captures and delivers the individualized information patients, their primary care providers, and other healthcare professionals need to ensure effective survivorship care.

My Care Plan:

  • Identifies patient’s needs, concerns and ongoing symptoms
  • Facilitate coordination of care by identifying the providers to contact for tests and follow‐up care
  • Provides tailored information on managing the patient’s particular symptoms
  • Educates the team on what to expect based on patient’s cancer type and treatment
  • Provides information on what to watch for and other resources

My Care Plan Design

These are the principles that guide the design of My Care Plan:

Flexibility & Integration

  • Works as a standalone tool
  • Works with Journey Forward’s Survivorship Care Plan Builder (which, in turn, integrates with EHRs via cancer registry software)
  • Works in conjunction with treatment summaries produced by other professional tools and EHRs

Works Everywhere You Are

  • Available on all computing platforms
  • Leverages the web and Adobe Reader (PDF)

Easy‐to‐Use

  • No user learning curve
  • No installed software
  • Can be filled in electronically or with paper and pen

Privacy & Security

  • Data is saved to the user’s hard drive or any secured location specified by the patient or provider

Updatable & Sharable

  • Can be edited by multiple team members to support provider‐patient collaboration

How My Care Plan Fits Into Journey Forward

With My Care Plan and the other complimentary tools in Journey Forward’s survivorship suite, patients and their care team are engaged to addresses all the main barriers to providing Survivorship Care Plans, including:

  1. Wide variations in levels of provider and patient engagement
  2. Limited clinician time and resources
  3. Dissimilar technology environments
  4. Diverse information sources

We are closing the gap in survivorship care by making collaborative care planning a reality. Our application suite, as shown below, provides patients and providers with the tools for effective care planning —whatever their level of engagement and whatever their technology environment.

Adding the My Care Plan functionality will complete the Journey Forward suite of survivorship tools with a patient‐centric survivorship care plan template, created by the survivor with the help of their oncology provider.

Managing the Transition Back to Primary Care

The ultimate goal for any patient is to return to normal life with complete confidence that they and their care team are doing everything possible to:

  • Address immediate needs, concerns and symptoms
  • Ensure appropriate monitoring

My Care Plan is a blueprint for the journey forward. It a custom, living and collaborative document and integrated resource library that provides a basis for managing the patient’s ongoing care in partnership.

Because Journey Forward offers interlocking tools for patients and professionals, our suite functionally supports collaboration across the spectrum of patient and provider engagement.

How My Care Plan Will Help Patients

My Care Plan empowers patients with the tools to participate in—or even drive—the care planning process. Patients can now have a Survivorship Care Plan even if their oncologist hasn’t provided one.

My Care Plan ensures that patients’ key issues are identified and includes help for managing those issues.

My Care Plan is easy-to-use. It requires no user learning curve, no installed software. It is available on all major computing platforms or can be completed electronically or with paper and pen.

My Care Plan is private, secure, updatable and sharable.

How My Care Plan Will Help Healthcare Professionals

My Care Plan helps oncology providers transition patients, who have completed active treatment for
cancer, back to primary care.

My Care Plan ensures that primary care providers and other specialists have the information they need to manage cancer survivors’ unique healthcare needs.

My Care Plan is adaptable to different technology environments. It functions as standalone tool; it works with Journey Forward’s Survivorship Care Plan Builder (which is being integrated with EHR’s via cancer registry software); and it works in conjunction with treatment summaries produced by other professional tools/EHRs.

We believe that Survivorship Care Plans improve patient satisfaction.

Journey Forward’s award-winning suite of survivorship tools are available to patients and professionals at no charge. We provide free user assistance via phone and email.

Partnering With Journey Forward

Journey Forward’s partners are the patients, healthcare professionals and advocacy groups working to make survivorship care a new standard. We provide a set of free tools to improve care – all of which were developed based on your input.

We wish to increase our collaboration with cancer advocacy groups to build awareness for survivorship issues and increase usage of the Journey Forward toolset.

About the Journey Forward Team

Journey Forward was created by a collaboration among:

Thank You!

Without the direction, help and support of patients, healthcare professionals, and people like you, we would not have gotten this far. Thank you!

Journey Forward
c/o NearSpace, Inc.
Phone: 707.636.5900
Fax: 707.636.5905
Email: info@journeyforward.org

Mailing address:
5865 Labath Avenue, Ste. 7
Rohnert Park, CA 94928

Bibliography

Below is a sample of the research on survivorship care planning:

Patient and Provider Preferences for Survivorship Care Plans
Mayer DK, Gerstel A, Leak AN, Smith SK. J Oncol Pract. 2012 July;8(4):80-86.

Survivorship Care Plans in Research and Practice
Salz T, Oeffinger KC, McCabe MS, Layne TM, Bach PB. CA Cancer J Clin. 2012 Mar; 62(2): 101-17.

Survivorship Care Planning After the Institute of Medicine Recommendations: How Are We Faring?
Stricker CT, Jacobs LA, Risendal B, et al. J Cancer Surviv. 2011 Dec;5(4):358-70. Epub 2011 Oct 4.

How Confident are Young Adult Cancer Survivors in Managing Their Survivorship Care? A Report from the LIVESTRONG™ Survivorship Center of Excellence Network
Casillas J, Syrjala KL, Ganz PA, et al. J Cancer Surviv. 2011 Dec;5(4):371-81. Epub 2011 Nov 2.

Evaluating Survivorship Care Plans: Results of a Randomized, Clinical Trial of Patients with Breast Cancer
Grunfeld E, Julian JA, Pond G, et al. J Clin Oncol. 2011 Dec 20;29(36):4755-62.

Is It Time for (Survivorship Care) Plan B?
Smith TJ, Snyder C. J Clin Oncol. 2011 Dec 20;29(36):4740-2.

Do Survivorship Care Plans Make a Difference? A Primary Care Provider Perspective
Shalom MM, Hahn EE, Casillas J, Ganz PA. J Oncol Pract. 2011 Sep;7(5):314-8.

Journey Forward: The New Face of Cancer Survivorship Care
Hausman J, Ganz PA, Sellers TP, Rosenquist J. J Oncol Pract. 2011 May;7(3 Suppl):e50s-6s.

Survivorship Programs and Care Plans in Practice: Variations on a Theme
Hahn EE, Ganz PA. J Oncol Pract. 2011 Mar;7(2):70-5.

Health Services for Cancer Survivors: Practice, Policy and Research
Feuerstein M, Ganz PA (eds). New York, NY, Springer 2011.

The Cancer Survivorship Care Plan: Health Care in the Context of Cancer
Feuerstein M. J Oncol Pract. 2009 May;5(3):113-5.

Adult Cancer Survivorship: Evolution, Research, and Planning Care
Jacobs LA, Palmer SC, Schwartz LA, et al. CA Cancer J Clin. United States, 2009, pp 391-410.

Survivorship Care: Essential Components and Models of Delivery
Landier W. Oncology Nurse 23, 2009.

The LIVESTRONG Survivorship Center of Excellence Network
Shapiro CL, McCabe MS, Syrjala KL, et al. J Cancer Surviv 3:4-11, 2009.
Implementing a Survivorship Care Plan for Patients with Breast Cancer
Ganz PA, Hahn EE. J Clin Oncol 26:759-67, 2008.

Ensuring Quality Care for Cancer Survivors: Implementing the Survivorship Care Plan
Ganz PA, Casillas J, Hahn EE. Semin Oncol Nurs 24:208-17, 2008.

Survivorship Care: Models and Programs
McCabe M, Jacobs L. Sem Oncol Nurs 24:202-7, 2008.

Follow-up of Adult Cancer Survivors: New Paradigms for Survivorship Care Planning
Horning SJ. Hematol Oncol Clin North Am. Volume 22, Issue 2, 2008, pp 201-10.

Implementing Cancer Survivorship Care Planning: Workshop Summary
Hewitt M, Ganz PA. Washington, DC, National Academies Press, 2007.

The Survivorship Care Plan: What, Why, How, and for Whom. Cancer Survivorship: Today and Tomorrow
Earle CC, Schrag D, Woolf SH, Ganz PA. New York, NY, Springer 2007, pp 287-293.

Models for Delivering Survivorship Care
Oeffinger KC, McCabe MS. J Clin Oncol 24:5117-24, 2006.

Failing to Plan Is Planning to Fail: Improving the Quality of Care With Survivorship Care Plans
Earle C. J Clin Oncol 24:5112-5116, 2006.

From Cancer Patient to Cancer Survivor: Lost in Transition
Hewitt M, Greenfield S, Stovall E. (eds). Washington, DC, National Academies Press, 2006.

A Model for Care Across the Cancer Continuum
Hudson MM. Cancer 104:2638-42, 2005

Rewards

For $ 5 or more

9 Backer(s)


Our sincere Thanks and numbered inclusion in our online Scroll Of Support listed in order of date of contribution. Thank You!

For $ 250 or more

2 Backer(s)


Our sincere thanks and inclusion in our online list of Premium Supporters

For $ 2500 or more

0 Backer(s)


Practices and Institutions: One-on-one assistance integrating My Care Plan into your practice.

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