A Novel Patient Values Tab for the Electronic Health Record: A User-Centered Design Approach.

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.

Needs and Perspectives of Cancer Center Stakeholders for Access to Patient Values in the Electronic Health Record.

PURPOSE: High-quality cancer care must incorporate patients' personal values in decision making throughout illness. Unfortunately, patient values are neither consistently elicited nor easily accessible in the electronic health record (EHR). Memorial Sloan Kettering Cancer Center is deploying a major EHR innovation, called the Patient Values Tab, which provides ready access to patients' values and personhood. To inform the Tab's design, we interviewed a large, diverse group of institutional stakeholders to understand their user needs for this Tab. METHODS: Qualitative data were collected through semistructured, audio-recorded, in-person, individual interviews. An interdisciplinary team of four coders conducted a process of thematic content analysis. Thematic saturation was achieved, and member checking was performed. RESULTS: A total of 110 stakeholders were approached and interviewed. Participants comprised a wide range of disciplines or professions and others involved in hospital and/or clinic administration. Analysis revealed the following themes related to important Tab content: personhood, support system or resources, social history, communication preferences, future planning, end of life, and illness and treatment understanding. Participants also discussed implementation considerations, the Tab's potential to improve communication, and privacy implications. CONCLUSION: This study focused on a major EHR innovation to centralize information about values and personhood of patients with cancer. We elicited views of over 100 institutional stakeholders through in-depth interviews that were rigorously analyzed, yielding themes related to content and format that helped guide the Tab's design. The interviews generated a sense of ownership and enthusiasm for the Tab among future users. The Tab's introduction advances the use of the EHR as a driver of the delivery of patient-centered care.

Mapping Local Biospecimen Records to the OMOP Common Data Model.

Research to support precision medicine for leukemia patients requires integration of biospecimen and clinical data. The Observational Medical Outcomes Partnership common data model (OMOP CDM) and its Specimen table presents a potential solution. Although researchers have described progress and challenges in mapping electronic health record (EHR) data to populate the OMOP CDM, to our knowledge no studies have described populating the OMOP CDM with biospecimen data. Using biobank data from our institution, we mapped 26% of biospecimen records to the OMOP Specimen table. Records failed mapping due to local codes for time point that were incompatible with the OMOP reference terminology. We recommend expanding allowable codes to encompass research data, adding foreign keys to leverage additional OMOP tables with data from other sources or to store additional specimen details, and considering a new table to represent processed samples and inventory.

Applying User-Centered Design in the Electronic Health Record (EHR) to Facilitate Patient-Centered Care in Oncology.

Patient-centered care is an essential component of quality health care. To support patient-centered care initiatives at our institution, we created a feature in our EHR to centrally view information about the patient's values, goals and preferences. We applied user-centered design methods to ensure that the aggregate view was easy to use and would meet user needs. We created a six-week plan to iterate through increasingly detailed design mock-ups. We defined 7 user stories that later served as a basis for user testing scripts. We conducted user testing on our third design iteration; we reached theme saturation with 8 testing sessions. We incorporated findings into the fourth design (week 6) but continued to refine the design in parallel to development (through week 20+). The advance directives section required the most attention. We will use a pilot and additional user testing to validate the design and to inform future versions.

Cancer biology as revealed by the research autopsy.

A research autopsy is a post-mortem medical procedure performed on a deceased individual with the primary goal of collecting tissue to support basic and translational research. This approach has increasingly been used to investigate the pathophysiological mechanisms of cancer evolution, metastasis and treatment resistance. In this Review, we discuss the rationale for the use of research autopsies in cancer research and provide an evidence-based discussion of the quality of post-mortem tissues compared with other types of biospecimens. We also discuss the advantages of using post-mortem tissues over other types of biospecimens, including the large amounts of tissue that can be obtained and the extent of multiregion sampling that is achievable, which is not otherwise possible in living patients. We highlight how the research autopsy has supported the identification of the clonal origins and modes of spread among metastases, the extent that selective pressures imposed by treatments cause bottlenecks leading to parallel and convergent tumour evolution, and the creation of rare tissue banks and patient-derived model systems. Finally, we comment on the future of the research autopsy as an integral component of precision medicine strategies.

Stakeholders' Perceptions and Information Needs Regarding Research Medical Donation.

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.

Quantification of nucleic acid quality in postmortem tissues from a cancer research autopsy program.

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.