Evaluation of a Patient Held Record for Post-Operative Surveillance of Patients with Colorectal Cancer: enhancing individual patient understanding and engagement in clinical care

Rationale, aims and objectives: Meta-analyses suggest that post-operative surveillance for patients with colorectal cancer (CRC) improves survival. At our tertiary care cancer centre we introduced a patient held record (PHR) that outlined a recommended post-operative surveillance protocol for patients with CRC.  The purpose of the PHR was to enhance patient understanding and engagement in their post-operative care and thus to facilitate the development of person-cenered approaches to care in CRC. Methods: Mixed methods were used to evaluate the effect of the PHR on patients' surveillance experiences. A survey was mailed to all PHR recipients to evaluate their use of the PHR and its perceived value. Qualitative interviews were completed with selected survey respondents to better understand how the PHR affected surveillance and to identify how the process of using the PHR could be improved. Themes were generated using standard qualitative methodology. Results: The survey response rate was 58%. Median surveillance was 71 months. 61% of respondents remembered receiving the PHR. Of those, 35% reported still using the PHR and 35% reported being asked to show the PHR by their health care provider in clinic. 12 qualitative interviews were completed and generated themes included: satisfaction with follow-up care, understanding the importance of surveillance, lack of system-wide approach to incorporating the PHR into everyday use and patient generation of own tools for follow-up. Conclusions: Most patients value close surveillance for CRC and most frequently used their own tools to track surveillance. Successful implementation of a surveillance PHR would require a system-wide organizational approach. With the anticipated increase in patient volumes we foresee that patients will become more involved in their own post-operative surveillance and survivorship plans, enabling increased patient empowerment, a key component of person-centered approaches in cancer medicine.