Encouraging Patients to Speak up About Problems in Cancer Care

Abstract

Objectives Many patients with cancer believe something has gone wrong in their care, but are reluctant to speak up. This pilot study sought to evaluate the impact of an intervention of active outreach to patients undergoing cancer treatment, wherein patients were encouraged to speak up if they had concerns about their care, and to describe the types of concerns patients reported. Methods Patients receiving cancer care at two sites were randomly assigned to an intervention or control group. Intervention patients received a brochure encouraging them to speak up about any concerns, and an outreach telephone call during which the interviewer explicitly asked about concerns. Participants in both groups received baseline and follow-up questionnaires assessing their perceptions of their care and whether anything had “gone wrong”, and provided ratings of health care providers’ communication and responsiveness. Qualitative content coding was used to categorize patient-reported concerns collected through the baseline and follow-up questionnaires (both groups) and during telephone outreach (intervention patients only). The primary outcome was the number of patients reporting a concern about their care. Communication and responsiveness ratings for intervention and control group patients were compared using t-tests. Results Of the 60 patients in the intervention group, 34 (56.7%) reported at least one problem or concern, compared to 16 (29.1%) of the 55 patients in the control group (p=.003). The telephone outreach in particular resulted in over half of those reached reporting a new concern (55.3%). We detected no impact of the intervention on patients’ ratings of communication or support for speaking up. Conclusions Patients in this study reported a variety of concerns in response to active outreach, demonstrating that active outreach to patients can provide healthcare teams and systems the opportunity to offer a real-time response to the patient, identify where system improvements are needed, and implement policies, procedures, or programs to prevent recurrences.

Speak up" project for patient safety, golden jubilee medical center

“…Two phases comprised 􀅫irstly the development of the patient participation assessment form and secondly the subject study. The former included reviewing literature and relevant journals, contact the copyright owner of the assessment form, patient focus group [11]…”

“…The trend is apparently exemplary in more patient participation in their own personal records [5], including the global Speak UpTM program promoted by the Joint Commission and Centers for Medicare & Medicaid Services [10]. Medical staff will be questioned about hand hygiene before patient contact, what kind of drugs being administered and for what, etc [11]. Before admission, patients will be informed about their rights, encouraged to question any treatment to them and given resources for skill practice in communicating with care providers [12].…”

Communicating with patients about breakdowns in care: a national randomised vignette-based survey

“…As the ‘closest observers of care’, patients and family members have unique insights into how care is delivered 1. A growing body of research documents that when asked about their care experiences, patients and family members identify a variety of problematic events 2–10. Breakdowns in care, which we consider to be anything that has gone wrong in care from the perspective of the patient, encompass medical errors and adverse events identified by the patient, as well as other events—such as communication problems—that would not typically be classified as a medical error.…”