Abstract
Background/Aims In earlier work, we found that many cancer patients believed that something had gone wrong during their care but did not formally report their concerns, inhibiting clinicians’ ability to address patients’ concerns. In follow-up focus groups and surveys, clinicians expressed their desire to know about patients’ concerns. Therefore, we developed the “We Want to Know” campaign to encourage patients to speak up about perceived breakdowns in care. This abstract describes the planned intervention and evaluation.
Methods Key components of the We Want to Know campaign are: 1) message content is simple and direct, acknowledging the complexity of cancer care, and inviting patients to speak up about their concerns; 2) the message is delivered to patients via at least two channels – mailed brochure and an outreach telephone call; 3) participating organizations identify staff who can help to address patients’ concerns. The campaign will be implemented at two Cancer Research Network sites; assignment to the campaign intervention will be randomized. Cancer patients will be surveyed prior to the intervention; those who respond will be surveyed again approximately 12 weeks later. Analyses will evaluate pre/post changes in communication experiences and perceptions, within and between intervention groups. Patients’ reports of problems and their resolution will also be examined.
Results Site leadership acknowledged that unreported patient concerns are a problem that merits attention, but wondered whether the intervention itself could generate concerns and stress the clinical system’s capacity to respond. The participating CRN sites have differing organizational constraints which have led to minor differences in implementation. At one site, research staff will make outreach telephone calls to patients; at the other site, nursing staff will do so. One site will place campaign posters in clinics in addition to calls and the mailing. In an effort to be sensitive to the organizations’ leadership concerns, the campaign will seek to elicit reports of positive experiences as well as problematic ones.
Conclusions This pilot study will provide preliminary data on the effectiveness of the campaign in encouraging patients to express their concerns, and about the resources needed to respond to those concerns in real time.
