Realizing Our Potential in Biobanking: Disease Advocacy Organizations Enliven Translational Research.

Biobanks are increasingly powerful tools used in translational research, and disease advocacy organizations (DAOs) are making their presence known as research drivers and partners. We examined DAO approaches to biobanking to inform how the enterprise of biobanking can grow and become even more impactful in human health. In this commentary, we outline overarching approaches from successful DAO biobanks. These lessons learned suggest principles that can create a more participant-centric approach and illustrate the key roles DAOs can play as partners in research initiatives. DAO approaches to biobanking for translational research include the following: be outcome driven; forge alliances that are unexpected-build bridges to enhance translation; come ready for success; be nimble, flexible, and adaptable; and remember that people matter. Each of these principles led to particular practices that have increased the translational impact of biobank collections. The research practices discussed can inform partnerships in all sectors going forward.

Reframing the goals of care conversation: "we're in a different place".

PURPOSE: Existing recommendations for communicating with patients with metastatic cancer about redefining goals of care when anticancer treatment is unlikely to provide benefit are based on limited evidence. This study was designed to elicit patient and family views on commonly used communication practices. STUDY DESIGN AND METHODS: Participants were 37 patients with metastatic gastrointestinal cancer and 20 bereaved family members who listened to audiorecordings of oncology fellows instructed to discuss a transition in goals of care with a standardized patient for whom evidence-based palliative chemotherapy was no longer effective. During semistructured qualitative interviews, participants commented on the audiorecordings to give feedback on what they liked or disliked about the oncologist's communication. These comments were transcribed and analyzed. RESULTS: Three preferred communication practices were identified from participants' comments. The first practice involves a necessary disruption of the patient's expectations about "trying another chemo" ("We're in a different place"). The second practice is offering actionable responses to the disruption ("Here's what we can do now"). The third practice is to find a new place that acknowledges death is closer yet still allows for "living forward" ("Use your inner wisdom"). CONCLUSION: This study of patient and family feedback indicates that patients and families perceive a conversation about goals of care to require disruption of an existing routine, followed by a process of searching and then reconfiguration, rather than a logical decision process. These findings suggest that assessing quality from patient perspectives must take into account a period of disruption and chaos.

What patients value when oncologists give news of cancer recurrence: commentary on specific moments in audio-recorded conversations.

PURPOSE: Recommendations for communicating bad or serious news are based on limited evidence. This study was designed to understand patient perspectives on what patients value when oncologists communicate news of cancer recurrence. STUDY DESIGN AND METHODS: Participants were 23 patients treated for a gastrointestinal cancer at a tertiary U.S. cancer center within the past 2 years, who had semistructured qualitative interviews in which they listened to audio recordings of an oncology fellow discussing news of cancer recurrence with a standardized patient. Participants paused the audio recording to comment on what they liked or disliked about the oncologist's communication. RESULT: Three themes were identified that refine existing approaches to discussing serious news. The first theme, recognition, described how the oncologist responded to the gravity of the news of cancer recurrence for the patient. Participants saw the need for recognition throughout the encounter and not just after the news was given. The second theme, guiding, describes what participants wanted after hearing the news, which was for the oncologist to draw on her biomedical expertise to frame the news and plan next steps. The third theme, responsiveness, referred to the oncologist's ability to sense the need for recognition or guidance and to move fluidly between them. CONCLUSION: This study suggests that oncologists giving news of cancer recurrence could think of the communication as going back and forth between recognition and guidance and could ask themselves: "Have I demonstrated that I recognize the patient's experience hearing the news?" and "Have I provided guidance to the next steps?"

Efficacy of communication skills training for giving bad news and discussing transitions to palliative care.

BACKGROUND: Few studies have assessed the efficacy of communication skills training for postgraduate physician trainees at the level of behaviors. We designed a residential communication skills workshop (Oncotalk) for medical oncology fellows. The intervention design built on existing successful models by teaching specific communication tasks linked to the patient's trajectory of illness. This study evaluated the efficacy of Oncotalk in changing observable communication behaviors. METHODS: Oncotalk was a 4-day residential workshop emphasizing skills practice in small groups. This preintervention and postintervention cohort study involved 115 medical oncology fellows from 62 different institutions during a 3-year study. The primary outcomes were observable participant communication skills measured during standardized patient encounters before and after the workshop in giving bad news and discussing transitions to palliative care. The standardized patient encounters were audiorecorded and assessed by blinded coders using a validated coding system. Before-after comparisons were made using each participant as his or her own control. RESULTS: Compared with preworkshop standardized patient encounters, postworkshop encounters showed that participants acquired a mean of 5.4 bad news skills (P<.001) and a mean of 4.4 transitions skills (P<.001). Most changes in individual skills were substantial; for example, in the bad news encounter, 16% of participants used the word "cancer" when giving bad news before the workshop, and 54% used it after the workshop (P<.001). Also in the bad news encounter, blinded coders were able to identify whether a standardized patient encounter occurred before or after the workshop in 91% of the audiorecordings. CONCLUSION: Oncotalk represents a successful teaching model for improving communication skills for postgraduate medical trainees.

Using the American Board of Internal Medicine's "Elements of Professionalism" for undergraduate ethics education.

PURPOSE: To examine the feasibility of using the taxonomy of professional and unprofessional behaviors presented in the American Board of Internal Medicine's (ABIM's) Project Professionalism to categorize ethical issues that undergraduate medical students perceive to be salient. METHOD: Beginning second-year medical students at the University of Washington School of Medicine (n = 120) were asked to respond to three open-ended questions about professional standards of conduct and peer evaluation. Two of the authors read and coded the students' responses according to the ABIM's elements of professionalism (altruism, accountability, excellence, duty, honor and integrity, and respect for others) and the challenges to those elements (abuse of power, arrogance, greed, misrepresentation, impairment, lack of conscientiousness, and conflict of interest). Coding disagreements were solved using review and revision of the category definitions. New categories were created for students' responses that described behaviors or issues that were not captured in the ABIM's categories. RESULTS: A total of 114 students responded. The ABIM's professional code was adapted for students and teachers, making it context- and learning-stage-specific. One new category of challenges, conflicts of conscience, was added, and one category (abuse of power) was expanded to include abuse of power/negotiating power asymmetries. CONCLUSIONS: Using the ABIM's taxonomy to name professional and unprofessional behaviors was particularly useful for examining undergraduate medical students' perceptions of the ethical climate for learning during the first year of medical school, and it holds promise for research into changes in students' perceptions as they move into clinical experiences. Using the framework, students can build a unified professional knowledge-and-skills base.