Creating Interactive Models of Healthcare Journeys to improve Patient-Centered Care and Patient Engagement

Project Image
A screenshot of MyPath, an application that offers personalized support for those diagnosed with breast cancer.

Project Contributors

Maia Jacobs
Aditi Dhar
James Clawson
Elizabeth "Beth" Mynatt

In this work we examine how support may be improved for those managing chronic illness. Health information management for individual's with a chronic illness is a challenging and personal process that changes over time based on one’s needs, goals, and health status. While technologies supporting health information management appear promising, we do not fully understand how health information tools fit into patients’ daily lives. To better understand the opportunities and usage barriers of these tools, we have partnered with healthcare professionals in Rome, GA to develop, deploy, and assess novel technologies that offer support to breast cancer patients throughout the entire cancer journey.

My Journey Compass:
The My Journey Compass project examined the ability for existing mobile technology to support breast cancer patients. Existing patient-centered technologies demonstrate great promise for users, however they often focus on solitary moments or singular tasks within a broader healthcare journey. We utilized a technology probe to investigate how patients managing long-term diseases use flexible health tools throughout their health journeys. We developed mobile tablets for breast cancer patients that were customizable, integrated into patients' existing healthcare system, and included a suite of health, communication, and entertainment resources. Over the course of a year, the tablets were deployed to newly diagnosed breast cancer patients. The results of this research include design guidelines for future mobile health tools, specifically highlighting the importance of customization and personalization in patient-centric interventions.

The MyJourney Compass tablet consists of a suite of useful applications and resources specifically selected to support breast cancer patients in the cancer journey. To assemble these resources, we collaborated with health professionals in the Rome, GA community, including oncologists, cancer navigators, breast cancer survivors, and directors from two local cancer care centers.

Every individual diagnosed with breast cancer in the Rome GA cancer care system during the study period was offered the opportunity to participate in our research efforts. Our 36 participants used the tablets for a collective 2,316 hours. 14 participants have continued to use My Journey Compass after completing active treatment. Participant interviews and analysis of tablet usage data have provided insight into opportunities for enhancing the technological support available to patients, including the value of integrating health and personal resources for encouraging long-term engagement with health tools. For more information regarding the contributions of this work, please see the publications listed below. This work was funded by the Georgia Department of Community Health.

This work has been presented at several conferences, including: CHI, CSCW, and Wireless Health.

MyPath:
In this work we aim to advance our understanding of how we can create personalized tools to support complex healthcare journeys. In chronic disease management, the responsibility is placed on the patient to become a healthcare expert. Patients must cope with these new tasks alongside the responsibilities of daily life. Few tools today capture dynamic patient journeys from the patient’s vantage point. We explore how technologies may use and act on data about a person’s holistic healthcare experience. This patient-centered health tool offers personalized support throughout treatment and survivorship, providing customized, dynamic content based on both temporal data (such as a patient’s phase of care in the cancer journey) as well as continuous user input. We assess the opportunity for such technology to support patients through the development of personalized health tools for those managing breast cancer, and the assessment of this technology in real world deployments. This work is supported by an NIH/NCI Smart and Connected Health award (RO1 CA195653).

Funding:
This work would not be possible without the support of the Georgia Department of Community Health and the National Institute of Health (RO1 CA195653).

In the News:
Report on Cancer and Technology Highlights Georgia Tech Research
Health in your pocket: Can a mobile phone make healthcare more fair?
MyJourney Compass: The Next Generation
National Pilot Project Uses Information to Improve Cancer Treatment
Health care in your hand: MyJourney Compass program puts cancer patients in control of their care

Check out our project video:
https://www.youtube.com/watch?v=wzr6yAmQtbA

Related Publications

Articulating a Patient-Centered Design Space for Cancer Journeys

Jacobs, Maia, James Clawson, and Elizabeth D. Mynatt. (2017). Articulating a Patient-Centered Design Space for Cancer Journeys. EAI Endorsed Transactions on Pervasive Health and Technology 3 (9): e5. [pdf]

A Cancer Journey Framework: Guiding the Design of Holistic Health Technology.

Jacobs, M., Clawson, J., Mynatt, E.D. “A Cancer Journey Framework: Guiding the Design of Holistic Health Technology.” 10th EAI International Conference on Pervasive Computing Technologies for Healthcare (Pervasive Health 2016). Cancun, Mexico. 16-19 May 2016. [pdf]

Lessons learned from a yearlong deployment of customizable breast cancer tablet computers

Jacobs, M., Clawson, J., & Mynatt, E. D. (2015, October). Lessons learned from a yearlong deployment of customizable breast cancer tablet computers. In Proceedings of the conference on Wireless Health . ACM. [pdf]

Designing personalized technology to augment patient-centered care

Jacobs, M. (2015, September). Designing personalized technology to augment patient-centered care. In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing and Proceedings of the 2015 ACM International Symposium on Wearable Computers (pp. 489-494). ACM. [pdf]

My Journey Compass: A Preliminary Investigation of a Mobile Tool for Cancer Patients

Jacobs, M., Clawson, J., and Mynatt, E. My Journey Compass: A Preliminary Investigation of a Mobile Tool for Cancer Patients. Proceedings of the 32nd Annual SIGCHI Conference on Human Factors in Computing Systems (CHI ’14). Toronto, Canada. (2014). [link] [pdf]

Cancer Navigation: Opportunities and Challenges for Facilitating the Breast Cancer Journey

Jacobs, M., Clawson, J., and Mynatt, E.D. Cancer Navigation: Opportunities and Challenges for Facilitating the Breast Cancer Journey. Proceedings of 17th annual ACM conference on Computer Supported Cooperative Work and Social Computing (CSCW). (2014). Baltimore, MD. [link] [pdf]

Perceptions of Breast Cancer Navigation from Survivors and Oncologists

Jacobs, M., Clawson, J., and Mynatt, E.D. Perceptions of Breast Cancer Navigation from Survivors and Oncologists. Workshop on Interactive Systems in Healthcare (WISH ’13). Washington, D. C. (2013). [pdf]

Cancer Compass: Examining Personal Health Record Usage Among Breast Cancer Survivors

Jacobs, M., Clawson, J., Mynatt, E. Poster: Cancer Compass: Examining Personal Health Record Usage Among Breast Cancer Survivors. Proceedings of the 7th International Conference on Pervasive Computing Technologies for Healthcare (Pervasive Health 2013). Venice, Italy. [pdf]