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Background The COVID-19 pandemic has shined a harsh light on a critical deficiency in our health care system: our inability to access important information about patients’ values, goals, and preferences in the electronic health record (EHR). At Memorial Sloan Kettering Cancer Center (MSK), we have integrated and systematized health-related values discussions led by oncology nurses for newly diagnosed cancer patients as part of routine comprehensive cancer care. Such conversations include not only the patient’s wishes for care at the end of life but also more holistic personal values, including sources of strength, concerns, hopes, and their definition of an acceptable quality of life. In addition, health care providers use a structured template to document their discussions of patient goals of care. Objective To provide ready access to key information about the patient as a person with individual values, goals, and preferences, we undertook the creation of the Patient Values Tab in our center’s EHR to display this information in a single, central location. Here, we describe the interprofessional, interdisciplinary, iterative process and user-centered design methodology that we applied to build this novel functionality as well as our initial implementation experience and plans for evaluation. Methods We first convened a working group of experts from multiple departments, including medical oncology, health informatics, information systems, nursing informatics, nursing education, and supportive care, and a user experience designer. We conducted in-depth, semistructured, audiorecorded interviews of over 100 key stakeholders. The working group sought consensus on the tab’s main content, homing in on high-priority areas identified by the stakeholders. The core content was mapped to various EHR data sources. We established a set of high-level design principles to guide our process. Our user experience designer then created wireframes of the tab design. The designer conducted usability testing with physicians, nurses, and other health professionals. Data validation testing was conducted. Results We have already deployed the Patient Values Tab to a pilot sample of users in the MSK Gastrointestinal Medical Oncology Service, including physicians, advanced practice providers, nurses, and administrative staff. We have early evidence of the positive impact of this EHR innovation. Audit logs show increasing use. Many of the initial user comments have been enthusiastically positive, while others have provided constructive suggestions for additional tab refinements with respect to format and content. Conclusions It is our challenge and obligation to enrich the EHR with information about the patient as a person. Realization of this capability is a pressing public health need requiring the collaboration of technological experts with a broad range of clinical leaders, users, patients, and families to achieve solutions that are both principled and practical. Our new Patient Values Tab represents a step forward in this important direction.

The last decade has seen a marked rise in the use of cancer tissues obtained from research autopsies. Such resources have been invaluable for studying cancer evolution or the mechanisms of therapeutic resistance to targeted therapies. Degradation of biomolecules is a potential challenge to usage of cancer tissues obtained in the post-mortem setting and remains incompletely studied. We analysed the nucleic acid quality in 371 different frozen tissue samples collected from 80 patients who underwent a research autopsy, including eight normal tissue types, primary and metastatic tumors. Our results indicate that RNA integrity number (RIN) of normal tissues decline with the elongation of post-mortem interval (PMI) in a tissue-type specific manner. Unlike normal tissues, the RNA quality of cancer tissues is highly variable with respect to post-mortem interval. The kinetics of DNA damage also has tissue type-specific features. Moreover, while DNA degradation is an indicator of low RNA quality, the converse is not true. Finally, we show that despite RIN values as low as 5.0, robust data can be obtained by RNA sequencing that reliably discriminates expression signatures.

QUESTION ASKED: What is the most important information that diverse institutional stakeholders at a comprehensive cancer center need to know about patients to provide patient-centered care, and what is the best way to display this information in a new single-location feature in the electronic health record (EHR)? SUMMARY ANSWER: Thematic content analysis of semistructured interviews with a large and diverse group of institutional stakeholders at our comprehensive cancer center revealed themes informing design and development of the Patient Values Tab EHR feature, generated enthusiasm and buy-in for this digital innovation, created a sense of awareness among future users, and paved the way for implementation. WHAT WE DID: Qualitative data were collected through in-person, guide-based, audio-recorded, individual interviews with a total of 110 stakeholders representing a wide range of disciplines and professions, as well as others involved in administration of the hospital or clinics within our cancer center. WHAT WE FOUND: Respondents felt that to facilitate the delivery of patient-centered care, information in the following categories should be displayed: the patient's personhood, support system and resources, social history, communication preferences, future planning, end of life, and illness and treatment understanding. Other important themes that arose in the interviews included implementation considerations, improved communication and relationship building, and privacy implications. BIAS, CONFOUNDING FACTORS, DRAWBACKS, REAL-LIFE IMPLICATIONS: Since this study was conducted at a single dedicated cancer center, generalizability of findings across other healthcare settings merits further investigation. It is possible that non–English-speaking clinicians and patients, who were not interviewed, might have different needs or perspectives. We designed our Patient Values Tab for our institution's EHR (Allscripts); however, this display feature can be configured in other EHR software. By interviewing a large and varying sample of stakeholders and rigorously analyzing their responses, we obtained robust results to inform the development and implementation of this innovative EHR feature centralizing key information needed to enhance patient-centered cancer care. The introduction of the new Patient Values Tab at this well-known cancer center signals the importance of patient personhood and values throughout the institution and advances the use of the EHR as a driver of the delivery of patient-centered care throughout the illness.

Context. Research Medical Donation (RMD), which entails collecting human tissue within hours after death, benefits cancer research but data are limited regarding barriers institutions face accruing patients to RMD programs. Objectives. The objective of this study was to generate stakeholder perspectives to best inform the complex RMD process, which includes communicating with patients and their proxies and procuring tissue in a timely manner, all the while respecting end-of-life care sensitivities. Methods. We explored perceived core needs and challenges of RMD by engaging stakeholders (cancer clinicians, patients, and their caregivers) in eight teleconference focus groups. Breast, pancreatic, and lung cancer clinicians comprised two groups. Each cancer separately had two groups for patients and their caregivers combined. Qualitative analysis of focus group transcripts included identifying and reaching group consensus on transcript themes and establishing agreement on consensus templates to identify primary common and divergent themes. Results. A total of 45 people (13 clinicians, 24 patients, eight caregivers) participated in the groups. The themes identified were as follows: 1) clinicians and patients had limited previous knowledge about RMD; 2) RMD was perceived to mainly benefit research; 3) logistical and privacy questions arose; 4) introducing RMD was deemed sensitive, with patient-specific timing; 5) rare and/or virulent cancers appeared associated with willingness to participate in RMD. Conclusion. Patients, families, and cancer clinicians have generally low knowledge of RMD but, upon learning about it, deem it valuable for scientific advancement (particularly for rare and virulent cancers), necessary to be carried out with individualized sensitivity to end-of-life issues, and through training programs with involved clinical staff.