A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study.

BACKGROUND: Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available. OBJECTIVE: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement. METHODS: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network. RESULTS: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period. CONCLUSIONS: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network.

"It helps us say what's important..." Developing Serious Illness Topics: A clinical visit agenda-setting tool.

BACKGROUND: Skillful communication with attention to patient and care partner priorities can help people with serious illnesses. Few patient-facing agenda-setting tools exist to facilitate such communication. OBJECTIVE: To develop a tool to facilitate prioritization of patient and care partner concerns during serious illness visits. PATIENT OR FAMILY INVOLVEMENT: Two family members of seriously ill individuals advised. METHODS: We performed a literature review and developed a prototype agenda-setting tool. We modified the tool based on cognitive interviews with patients, families and clinicians. We piloted the tool with patients, care partners and clinicians to gain an initial impression of its perceived value. RESULTS: Interviews with eight patients, eight care partners and seven clinicians, resulted in refinements to the initial tool, including supplementation with visual cues. In the pilot test, seven clinicians used the tool with 11 patients and 12 family members. Qualitatively, patients and care partners reported the guide helped them consider and assert their priorities. Clinicians reported the tool complemented usual practice. Most participants reported no distress, disruption or confusion. DISCUSSION: Patients, care partners and clinicians appreciated centering patient priorities in serious illness visits using the agenda-setting tool. More thorough evaluation is required. PRACTICAL VALUE: The agenda-setting tool may operationalize elements of good serious illness care.

Harnessing the Collective Expertise of Patients, Care Partners, Clinical Teams, and Researchers Through a Coproduction Learning Health System: A Case Study of the Dartmouth Health Promise Partnership.

The coproduction learning health system (CLHS) model extends the definition of a learning health system to explicitly bring together patients and care partners, health care teams, administrators, and scientists to share the work of optimizing health outcomes, improving care value, and generating new knowledge. The CLHS model highlights a partnership for coproduction that is supported by data that can be used to support individual patient care, quality improvement, and research. We provide a case study that describes the application of this model to transform care within an oncology program at an academic medical center.

Patient attitudes toward the use of fecal microbiota transplantation in the treatment of recurrent Clostridium difficile infection.

BACKGROUND: Fecal microbiota transplantation (FMT), a safe, effective alternative therapy for recurrent Clostridium difficile infection (CDI), is infrequently used, in part because of an assumption that patients are unwilling to consider FMT because of its unappealing nature. METHODS: Through a structured survey, including hypothetical case scenarios, we assessed patient perceptions of the aesthetics of FMT and their willingness to consider it as a treatment option, when presented with scenarios involving recurrent CDI. RESULTS: Four hundred surveys were distributed; 192 (48%) were returned complete. Seventy percent of respondents were female; 59% were >49 years of age. When provided efficacy data only, 162 respondents (85%) chose to receive FMT, and 29 (15%) chose antibiotics alone. When aware of the fecal nature of FMT, 16 respondents changed their choice from FMT to antibiotics alone, but there was no significant change in the total number choosing FMT (154 [81%]; P = .15). More respondents chose FMT if offered as a pill (90%; P = .002) or if their physician recommended it (94%; P < .001). Respondents rated all aspects of FMT at least "somewhat unappealing," selecting "the need to handle stool" and "receiving FMT by nasogastric tube" as most unappealing. Women rated all aspects of FMT more unappealing; older respondents rated all aspects less unappealing. Most respondents preferred to receive FMT in the hospital (48%) or physician's office (39%); 77% were willing to pay out-of-pocket for FMT. CONCLUSIONS: Patients recognize the inherently unappealing nature of FMT, but they are nonetheless open to considering it as a treatment alternative for recurrent CDI, especially when recommended by a physician.

Psychometric assessment of the consideRATE questions, a new measure of serious illness experience, with an online simulation study.

OBJECTIVE: To assess the psychometric properties of the consideRATE questions, a measure of serious illness experience. METHODS: We recruited people at least 50 years old via paid panels online, with US-Census-based quotas. We randomized participants to a patient experience story at two time points. Participants completed a series of measures, including the consideRATE questions. We assessed convergent (Pearson's correlation), discriminative (one-way ANOVA with Tukey's test for multiple comparisons) and divergent (Pearson's correlation) validity. We also assessed intra-rater reliability (intra-class correlation) and responsiveness to change (t-tests). RESULTS: We included 809 individuals in our analysis. We established convergent validity (r = 0.77; p < 0.001); discriminative validity (bad/neutral stories [mean diff=0.4; p < 0.001]; neutral/ good stories [mean diff=1.3; p < 0.001]) and moderate divergent validity (r = 0.57; p < 0.001). We established sensitivity to change in all stories (bad/good [mean diff=1.52; p < 0.001]; good/bad [mean diff= -1.68; p < 0.001]; neutral/bad [mean diff= -0.57; p < 0.001]; good/neutral [mean diff= -1.11; p < 0.001]; neutral/good [mean diff= 1.1; p < 0.001]) but one (bad/neutral [mean diff= 0.4; p < 0.07]). Intra-rater reliability was demonstrated between time points (r = 0.77; p < 0.001). CONCLUSIONS: the consideRATE questions were reliable and valid in a simulated online test. PRACTICE IMPLICATIONS: the consideRATE questions may be a practical way to measure serious illness experience and the effectiveness of interventions to improve it.

Prioritizing Measures That Matter Within a Person-Centered Oncology Learning Health System.

BACKGROUND: Despite progress in developing learning health systems (LHS) and associated metrics of success, a gap remains in identifying measures to guide the implementation and assessment of the impact of an oncology LHS. Our aim was to identify a balanced set of measures to guide a person-centered oncology LHS. METHODS: A modified Delphi process and clinical value compass framework were used to prioritize measures for tracking LHS performance. A multidisciplinary group of 77 stakeholders, including people with cancer and family members, participated in 3 rounds of online voting followed by 50-minute discussions. Participants rated metrics on perceived importance to the LHS and discussed priorities. RESULTS: Voting was completed by 94% of participants and prioritized 22 measures within 8 domains. Patient and caregiver factors included clinical health (Eastern Cooperative Oncology Group Performance Status, survival by cancer type and stage), functional health and quality of life (Patient Reported Outcomes Measurement Information System [PROMIS] Global-10, Distress Thermometer, Modified Caregiver Strain Index), experience of care (advance care planning, collaboRATE, PROMIS Self-Efficacy Scale, access to care, experience of care, end-of-life quality measures), and cost and resource use (avoidance and delay in accessing care and medications, financial hardship, total cost of care). Contextual factors included team well-being (Well-being Index; voluntary staff turnover); learning culture (Improvement Readiness, compliance with Commission on Cancer quality of care measures); scholarly engagement and productivity (institutional commitment and support for research, academic productivity index); and diversity, equity, inclusion, and belonging (screening and follow-up for social determinants of health, inclusivity of staff and patients). CONCLUSIONS: The person-centered LHS value compass provides a balanced set of measures that oncology practices can use to monitor and evaluate improvement across multiple domains.

Hand contamination of anesthesia providers is an important risk factor for intraoperative bacterial transmission.

BACKGROUND: We have recently shown that intraoperative bacterial transmission to patient IV stopcock sets is associated with increased patient mortality. In this study, we hypothesized that bacterial contamination of anesthesia provider hands before patient contact is a risk factor for direct intraoperative bacterial transmission. METHODS: Dartmouth-Hitchcock Medical Center is a tertiary care and level 1 trauma center with 400 inpatient beds and 28 operating suites. The first and second operative cases in each of 92 operating rooms were randomly selected for analysis. Eighty-two paired samples were analyzed. Ten pairs of cases were excluded because of broken or missing sampling protocol and lost samples. We identified cases of intraoperative bacterial transmission to the patient IV stopcock set and the anesthesia environment (adjustable pressure-limiting valve and agent dial) in each operating room pair by using a previously validated protocol. We then used biotype analysis to compare these transmitted organisms to those organisms isolated from the hands of anesthesia providers obtained before the start of each case. Provider-origin transmission was defined as potential pathogens isolated in the patient stopcock set or environment that had an identical biotype to the same organism isolated from hands of providers. We also assessed the efficacy of the current intraoperative cleaning protocol by evaluating isolated potential pathogens identified at the start of case 2. Poor intraoperative cleaning was defined as 1 or more potential pathogens found in the anesthesia environment at the start of case 2 that were not there at the beginning of case 1. We collected clinical and epidemiological data on all the cases to identify risk factors for contamination. RESULTS: One hundred sixty-four cases (82 case pairs) were studied. We identified intraoperative bacterial transmission to the IV stopcock set in 11.5 % (19/164) of cases, 47% (9/19) of which were of provider origin. We identified intraoperative bacterial transmission to the anesthesia environment in 89% (146/164) of cases, 12% (17/146) of which were of provider origin. The number of rooms that an attending anesthesiologist supervised simultaneously, the age of the patient, and patient discharge from the operating room to an intensive care unit were independent predictors of bacterial transmission events not directly linked to providers. CONCLUSION: The contaminated hands of anesthesia providers serve as a significant source of patient environmental and stopcock set contamination in the operating room. Additional sources of intraoperative bacterial transmission, including postoperative environmental cleaning practices, should be further studied.

User-Centered Design of the consideRATE Questions, a Measure of People's Experiences When They Are Seriously Ill.

CONTEXT: No brief patient-reported experience measure focuses on the most significant concerns of seriously ill individuals. OBJECTIVES: The objective of the study was to develop the consideRATE questions. METHODS: This user-centered design study had three phases. We reviewed the literature and consulted stakeholders, including caregivers, clinicians, and researchers, to identify the elements of care most important to patients (Phase 1). We refined items based on cognitive interviews with patients, families, and clinicians (Phase 2). We piloted the measure with patients and families (Phase 3). RESULTS: Phase 1 resulted in seven questions addressing the following elements: 1) care team attention to patients' physical symptoms, 2) emotional symptoms, 3) environment of care, 4) respect for patients' priorities, 5) communication about future plans, 6) communication about financial and similar affairs, and 7) communication about illness trajectory. Phase 2 participants included eight patients, eight family members, and seven clinicians. We added an open-text comment option. We did not identify any other issues that were important enough to participants to include. Response choices ranged from one (very bad) to four (very good), with a not applicable option (does not apply). Phase 3 involved 15 patients and 16 family members and demonstrated the acceptability of the consideRATE questions. Most reported that the questions were not distressing, disruptive, or confusing. Completion time averaged 2.4 minutes (range 1-5). CONCLUSION: Our brief patient-reported serious illness experience measure is based on what matters most to patients, families, and clinicians. It was acceptable to patients and families in a regional sample. It has promise for use in clinical settings.

From quid pro quo to quid pro bono: reshaping the influence of industry on health care epidemiologists.

Recent scrutiny of relationships between medical professionals and the pharmaceutical and medical device industries has highlighted many opportunities for conflicts of interest and has prompted calls for reforms in the way we conduct such business. This article reviews ways in which industry influences health care epidemiologists and considers a range of strategies that might be considered for reshaping these influences to preserve the benefits while eliminating the conflicts of interest.

Outbreak of skin infections in college football team members due to an unusual strain of community-acquired methicillin-susceptible Staphylococcus aureus.

We report a skin and soft-tissue infection outbreak among football team members due to a USA300 methicillin-susceptible Staphylococcus aureus (MRSA) strain with genes coding for Panton-Valentine leukocidin and the arginine catabolic mobile element. We postulate that the strain is a community-associated USA300 MRSA strain that lost methicillin resistance but retained important virulence factors.

The role for clinician educators in implementing healthcare improvement.

Clinician educators-who work at the intersection of patient care and resident education-are well positioned to respond to calls for better, safer patient care and resident education. Explicit lessons that address implementing health care improvement and associated residency training came out of the Academic Chronic Care Collaboratives and include the importance of: (1) redesigning the clinical practice as a core component of the residency curriculum; (2) exploiting the efficiencies of the practice team; (3) replacing "faculty development" with "everyone's a learner;" (4) linking faculty across learning communities to build expertise; and (5) using rigorous methodology to design and evaluate interventions for practice redesign. There has been progress in addressing three thorny academic faculty issues-professional satisfaction, promotion and publication. For example, consensus criteria have been proposed for both faculty promotion as well as the institutional settings that nurture academic health care improvement careers, and the SQUIRE Publication Guidelines have been developed as a general framework for scholarly improvement publications. Extensive curricular resources exist for developing the expert faculty cadre. Curricula from representative training programs include quantitative and qualitative research methods, statistical methodologies appropriate for measuring systems change, organizational culture, management, leadership and scholarly writing for the improvement literature. Clinician educators-particularly those in general internal medicine-bear the principal responsibility for both patient care and resident training in academic departments of internal medicine. The intersection of these activities presents a unique opportunity for their playing a central role in implementing health care improvement and associated residency training. However, this role in academic settings will require an unambiguous development strategy both for faculty and their institutions.

Taking off the gloves: toward a less dogmatic approach to the use of contact isolation.

Strongly held beliefs about the need for contact isolation to prevent the spread of infections in the hospital have contributed to increased costs and decreased flexibility and, more recently, have driven aggressive diagnostic testing for colonization in asymptomatic patients. Examination of the evidence cited in support of the benefits of isolation and growing evidence of its unintended harms offer an opportunity to think differently about how contact isolation might best be applied. This review considers what we do and do not know about the potential benefits and harms of isolation as a public health measure and proposes a framework for considering under what circumstances it might optimally be used.

Kinetics of pertussis immune responses to tetanus-diphtheria-acellular pertussis vaccine in health care personnel: implications for outbreak control.

We assessed the kinetics of the humoral immune response to pertussis antigens following vaccination of health care personnel with adult tetanus-diphtheria-acellular pertussis vaccine (Tdap). By 2 weeks after vaccination, 88%-94% of subjects demonstrated a booster response. This brisk response of adults to Tdap supports a role for vaccination in pertussis outbreak control.

Real-time polymerase chain reaction detection of Bordetella pertussis DNA in acellular pertussis vaccines.

Using 2 real-time polymerase chain reaction (PCR) assays for Bordetella pertussis, 2 of 5 acellular pertussis vaccines were found to contain B. pertussis DNA. Because residual DNA in vaccines can cause environmental contamination, the administration of acellular pertussis vaccines to patients should be physically separated from the collection of patients' specimens for testing of B. pertussis DNA by real-time PCR.

A Person-Centered, Registry-Based Learning Health System for Palliative Care: A Path to Coproducing Better Outcomes, Experience, Value, and Science.

BACKGROUND: Palliative care offers an approach to the care of people with serious illness that focuses on quality of life and aligning care with individual and family goals, and values in the context of what is medically achievable. OBJECTIVE: Measurement of the impact of palliative care is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness. METHODS: A learning health system that includes patients and families partnering with clinicians and care teams, is directly linked to a registry to support networks for improvement and research, and offers an ideal framework for measuring what matters to a range of stakeholders interested in improving care for this population. MEASUREMENTS: Measurement focuses on the individual patient and family experience as the fundamental outcome of interest around which all care delivery is organized. RESULTS: We describe an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research. DISCUSSION: The potential for a palliative care learning health system that, by design, brings together enriched information environments to support coproduction of healthcare and facilitated peer networks to support patients and families, collaborative clinician networks to support palliative care program improvement, and collaboratories to support research and the application of research to benefit individual patients is immense.