Digital Solutions for Cancer Survivorship Care (Preprint)
Authors: Oakley-Girvan Ingrid , Davis Sharon , O'Brien Dale G. , Schapira Lidia , Kurian Allison W. , Longmire Michelle , Divi Vasu 
Published: December 2018

BACKGROUND

Both the National Cancer Institute (NCI) and the National Academy of Medicine have stressed the importance of survivorship care plans (SCP) for cancer survivors and discussed the significance of input from survivors and their advocates. However, there are many barriers to cancer care coordination and the creation of SCPs, including oncology staff time required to write them. Although survivors valued SCPs and liked them, few survivors or care partners report receiving survivorship information. Digital platforms can support cancer survivorship care by integrating with the existing Electronic Health Record and presenting information in a dynamic and user-friendly format that improves coordination and communication.

OBJECTIVE

In this paper, we describe including medical staff, survivors, and informal care partners in developing a user-centered design for TOGETHERCareTM, (Track Outcomes & Guidance, Technology for Health & Effective Resources for Care) a smartphone mobile app envisioned to provide critical functionality, including planning and sharing the SCP among survivors, physicians, and informal care partners.

METHODS

Two interviewers conducted a total of nine semi-structured interviews, including a convenience sample of three clinical staff who work with cancer survivors, three cancer survivors, and three informal care partners currently caring for cancer survivors. The interviews with Spanish-speaking survivors and care partners were conducted with a translator. Notes from the interviews were transcribed into a prepared template. The results were compiled and coded by two members of the team.

RESULTS

We identified areas of consistency in responses between the three different groups in terms of how the mobile app should work, as well as areas of difference. Additional suggestions for features for the mobile app are also presented. Clinical teams focused on the efficiency of using the app, and features that would improve follow-up visits with survivors. Survivors and care partners were more focused on features that would provide assistance with at-home medical tasks and activities of daily living. Although all three groups agreed that there is currently no systematic way for specialists to keep in touch with survivors once they have moved to community care, and that SCPs would be useful, they currently do not receive or provide a SCP. Survivors, care partners, and clinical staff all agreed that they have smartphones and that a mobile app including the ability to communicate between the different groups, along with other features would be welcome and useful.

CONCLUSIONS

The ubiquity of smartphones and mobile app use provides an opportunity to incorporate patient outcomes and make information and survivorship plans more readily available to informal care partners and cancer survivors. Clinical teams, cancer survivors, and informal care partners all responded positively to a variety of features that could improve the efficiency of cancer care coordination and rapidly improve SCP provision.

CLINICALTRIAL

None.