Public Attitudes Regarding Hospitals and Physicians Encouraging Donations From Grateful Patients.

Importance: Philanthropy is an increasingly important source of support for health care institutions. There is little empirical evidence to inform ethical guidelines. Objective: To assess public attitudes regarding specific practices used by health care institutions to encourage philanthropic donations from grateful patients. Design, Setting, and Participants: Using the Ipsos KnowledgePanel, a probability-based sample representative of the US population, a survey solicited opinions from a primary cohort representing the general population and 3 supplemental cohorts (with high income, cancer, and with heart disease, respectively). Exposures: Web-based questionnaire. Main Outcomes and Measures: Descriptive analyses (with percentages weighted to make the sample demographically representative of the US population) evaluated respondents' attitudes regarding the acceptability of strategies hospitals may use to identify, solicit, and thank donors; perceptions of the effect of physicians discussing donations with their patients; and opinions regarding gift use and stewardship. Results: Of 831 individuals targeted for the general population sample, 513 (62%) completed surveys, of whom 246 (48.0%) were women and 345 (67.3%) non-Hispanic white. In the weighted sample, 47.0% (95% CI, 42.3%-51.7%) responded that physicians giving patient names to hospital fundraising staff after asking patients' permission was definitely or probably acceptable; 8.5% (95% CI, 5.7%-11.2%) endorsed referring without asking permission. Of the participants, 79.5% (95% CI, 75.6%-83.4%) reported it acceptable for physicians to talk to patients about donating if patients have brought it up; 14.2% (95% CI, 10.9%-17.6%) reported it acceptable when patients have not brought it up; 9.9% (95% CI, 7.1%-12.8%) accepted hospital development staff performing wealth screening using publicly available data to identify patients capable of large donations. Of the participants, 83.2% (95% CI, 79.5%-86.9%) agreed that physicians talking with their patients about donating may interfere with the patient-physician relationship. For a hypothetical patient who donated $1 million, 50.1% (95% CI, 45.4%-54.7%) indicated it would be acceptable for the hospital to show thanks by providing nicer hospital rooms, 26.0% (95% CI, 21.9%-30.1%) by providing expedited appointments, and 19.8% (95% CI, 16.1%-23.5%) by providing physicians' cell phone numbers. Conclusions and Relevance: In this survey study of participants drawn from the general US population, a substantial proportion did not endorse legally allowable approaches for identifying, engaging, and thanking patient-donors.

Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomised controlled trial.

BACKGROUND: Palliative oxygen therapy is widely used for treatment of dyspnoea in individuals with life-limiting illness who are ineligible for long-term oxygen therapy. We assessed the effectiveness of oxygen compared with room air delivered by nasal cannula for relief of breathlessness in this population of patients. METHODS: Adults from outpatient clinics at nine sites in Australia, the USA, and the UK were eligible for enrolment in this double-blind, randomised controlled trial if they had life-limiting illness, refractory dyspnoea, and partial pressure of oxygen in arterial blood (PaO(2)) more than 7.3 kPa. Participants were randomly assigned in a 1:1 ratio by a central computer-generated system to receive oxygen or room air via a concentrator through a nasal cannula at 2 L per min for 7 days. Participants were instructed to use the concentrator for at least 15 h per day. The randomisation sequence was stratified by baseline PaO(2) with balanced blocks of four patients. The primary outcome measure was breathlessness (0-10 numerical rating scale [NRS]), measured twice a day (morning and evening). All randomised patients who completed an assessment were included in the primary analysis for that data point (no data were imputed). This study is registered, numbers NCT00327873 and ISRCTN67448752. FINDINGS: 239 participants were randomly assigned to treatment (oxygen, n=120; room air, n=119). 112 (93%) patients assigned to receive oxygen and 99 (83%) assigned to receive room air completed all 7 days of assessments. From baseline to day 6, mean morning breathlessness changed by -0.9 points (95% CI -1.3 to -0.5) in patients assigned to receive oxygen and by -0.7 points (-1.2 to -0.2) in patients assigned to receive room air (p=0.504). Mean evening breathlessness changed by -0.3 points (-0.7 to 0.1) in the oxygen group and by -0.5 (-0.9 to -0.1) in the room air group (p=0.554). The frequency of side-effects did not differ between groups. Extreme drowsiness was reported by 12 (10%) of 116 patients assigned to receive oxygen compared with 14 (13%) of 108 patients assigned to receive room air. Two (2%) patients in the oxygen group reported extreme symptoms of nasal irritation compared with seven (6%) in the room air group. One patient reported an extremely troublesome nose bleed (oxygen group). INTERPRETATION: Since oxygen delivered by a nasal cannula provides no additional symptomatic benefit for relief of refractory dyspnoea in patients with life-limiting illness compared with room air, less burdensome strategies should be considered after brief assessment of the effect of oxygen therapy on the individual patient. FUNDING: US National Institutes of Health, Australian National Health and Medical Research Council, Duke Institute for Care at the End of Life, and Doris Duke Charitable Foundation.

When a chance to cut is not a chance to cure: a future for palliative surgery?

In the context of healthcare reform, Surgery stands at a critical juncture. Attempting to rein in healthcare spending, legislators and payers can be expected to closely examine the legitimacy and necessity of a variety of medical treatments, including surgical procedures. Among these procedures, the most at risk for dismissal based on perceived ineffectiveness or lack of need may be those performed near the end of life, when the potential benefit of surgical intervention may seem negligible. While procedures may be performed for a variety of reasons toward the end of life--some indeed being inappropriate and/or unnecessary--palliative surgery plays an important role in the management of incurable disease. The purposes of this article are to: describe the place for palliative surgery in the armamentarium of palliative care; discuss potential challenges to patients' access to palliative surgery that may arise from health policy or quality initiatives based on poor evidence; and outline a strategy for (a) systematically differentiating palliative surgeries from other, potentially expendable surgeries performed near the end of life, and (b) defining a plan for generating the evidence base to support best practice.

Correlates of quality of life-related outcomes in breast cancer patients participating in the Pathfinders pilot study.

OBJECTIVE: In a pilot study, participation in the Pathfinders program was associated with reductions in distress and despair and improvements in quality of life (QOL) among advanced breast cancer patients. This study explores the relationship between psychosocial resources invoked through the Pathfinders intervention and outcomes. METHODS: Advanced breast cancer patients were enrolled in a prospective, single-arm, pilot study of the Pathfinders psychosocial program. Participants met at least monthly with a licensed clinical social worker who administered the Pathfinders intervention, which focused on strengthening adaptive coping skills, identifying inner strengths, and developing a self-care plan. Longitudinal assessments over 6 months used validated instruments to assess changes in Pathfinders targets (coping, social support, self-efficacy, spirituality, and optimism) and outcomes (distress, despair, QOL, and fatigue). Multiple linear regression models examined the joint effect of average changes in target subscales on average outcome changes, adjusted for baseline outcome scores and patient characteristics. RESULTS: Participants (n=44) were: mean age 51 (SD, 12), 20% non-Caucasian, 50% college degree, and 75% married. Improvements in active coping skills, self-efficacy, and spiritual meaning/peace significantly correlated with an improvement in despair after adjustment for demographic characteristics (all P<0.05). Improvements in social support significantly correlated with positive changes in distress (P<0.05). Gains in learned optimism independently correlated with an increase in overall QOL (P<0.01). CONCLUSIONS: In this pilot assessment, changes in pre-defined Pathfinders targets such as coping skills, social support, self-efficacy, spirituality, and optimism correlated with improvements in patient-reported outcomes.

The value of data collection within a palliative care program.

Collecting reliable and valid data is an increasing expectation within palliative care. Data remain the crux for demonstrating value and quality of care, which are the critical steps to program sustainability. Parallel goals of conducting research and performing quality assessment and improvement can also ensure program growth, financial health, and viability in an increasingly competitive environment. Mounting expectations by patients, hospitals, and payers and inevitable pay-for-performance paradigms have transitioned data collection procedures from novel projects to expected standard operation within usual palliative care delivery. We present types of data to collect, published guides for data collection, and how data can inform quality, value, and research within a palliative care organization. Our experiences with the Quality Data Collection Tool (QDACT) in the Carolinas Palliative Care Consortium to collect data on quality have led to valuable lessons learned in creating a data collection system. Suggested steps in forming data-sharing collaborations and building data collection procedures are shared.

Electronic patient-reported data capture as a foundation of rapid learning cancer care.

BACKGROUND: "Rapid learning healthcare" presents a new infrastructure to support comparative effectiveness research. By leveraging heterogeneous datasets (eg, clinical, administrative, genomic, registry, and research), health information technology, and sophisticated iterative analyses, rapid learning healthcare provides a real-time framework in which clinical studies can evaluate the relative impact of therapeutic approaches on a diverse array of measures. PURPOSE: This article describes an effort, at 1 academic medical center, to demonstrate what rapid learning healthcare might look like in operation. The article describes the process of developing and testing the components of this new model of integrated clinical/research function, with the pilot site being an academic oncology clinic and with electronic patient-reported outcomes (ePROs) being the foundational dataset. RESEARCH DESIGN: Steps included: feasibility study of the ePRO system; validation study of ePRO collection across 3 cancers; linking ePRO and other datasets; implementation; stakeholder alignment and buy in, and; demonstration through use cases. SUBJECTS: Two use cases are presented; participants were metastatic breast cancer (n = 65) and gastrointestinal cancer (n = 113) patients at 2 academic medical centers. RESULTS: (1) Patient-reported symptom data were collected with tablet computers; patients with breast and gastrointestinal cancer indicated high levels of sexual distress, which prompted multidisciplinary response, design of an intervention, and successful application for funding to study the intervention's impact. (2) The system evaluated the longitudinal impact of a psychosocial care program provided to patients with breast cancer. Participants used tablet computers to complete PRO surveys; data indicated significant impact on psychosocial outcomes, notably distress and despair, despite advanced disease. Results return to the clinic, allowing iterative update and evaluation. CONCLUSIONS: An ePRO-based rapid learning cancer clinic is feasible, providing real-time research-quality data to support comparative effectiveness research.

Treatment-related toxicity and supportive care in metastatic colorectal cancer.

As survival of metastatic colorectal cancer (mCRC) increases, patients have more exposure to chemotherapy and related toxicity. The objective is to determine how toxicity patterns affect care. Via a population-based strategy, mCRC cases diagnosed between June 2003 and June 2006 were identified from one academic and nine community oncology practices in the southeastern United States. Demographic, disease, treatment, hospitalization, and toxicity data were abstracted by retrospective chart review, double-entered, and verified for accuracy. Of the 738 charts screened, 110 were eligible based upon preidentified inclusion criteria. As part of first-line chemotherapy, 87% received oxaliplatin, 12% received irinotecan, and 74% received bevacizumab. Gastrointestinal toxicity was the most common toxicity-related cause of drug discontinuation (16 of 61 events) and hospitalization (19 of 54 events). Both neurologic and hematologic toxicities were identified more frequently when oxaliplatin-containing regimens were administered (50% and 48%, respectively) than with irinotecan-containing regimens (10% and 24%, respectively). Dose reduction was most commonly associated with hematologic toxicity (22 of 55 events). Oxaliplatin and irinotecan required similar rates of antidiarrheal, antinausea, erythropoiesis-stimulating, and granulocyte-stimulating treatments. These data, obtained from a usual-practice setting, provide benchmarks to improve clinical practice.

Phase 2 pilot study of Pathfinders: a psychosocial intervention for cancer patients.

PURPOSE: Pathfinders is a multi-faceted psychosocial care program for cancer patients; it was developed in community oncology and adapted to the academic oncology setting. This prospective, single-arm, phase 2 pilot study examined the acceptability and feasibility of Pathfinders for women with metastatic breast cancer. METHODS: Over 3 months, participants completed patient-reported surveys including the Patient Care Monitor (PCM, review of systems), Functional Assessment of Chronic Illness Therapy-Breast Cancer (FACT-B), Self Efficacy, and a single-item survey asking patients whether the program was helpful to them. A technology-based data collection system was used to capture electronic patient-reported outcomes at point of care, report symptoms in real time to clinicians, and collect warehouse data to provide a detailed longitudinal picture of the patient experience when receiving Pathfinders. RESULTS: Participants (n = 50) were: mean age 51 (SD 11); 76% white, 20% black; 74% married; 50% college degree. Forty-two (n = 42) patients completed baseline and 3-month assessments. Statistically significant improvements (all P < 0.05) occurred in PCM subscales for Distress (mean [SE] = -3.42 [1.21]), Despair (-4.53 [1.56]), and Quality of Life (2.88 [0.97]), and the FACT-B Emotional Wellbeing subscale (2.07 [0.46]). Of the 29 participants asked if Pathfinders was helpful, 27 (93%) responded positively and two did not respond. Other instruments measuring symptoms, quality of life, and self-efficacy showed improvement. CONCLUSIONS: In a phase 2 pilot study, Pathfinders was helpful to patients and is feasible in an academic medical center. Follow-up data collected at the 3-month assessment suggest that the program impacts various psychological outcomes, notably distress and despair.

Systematic review: reliability of compendia methods for off-label oncology indications.

BACKGROUND: The Centers for Medicare & Medicaid Services limit coverage of cancer drugs for off-label indications to indications listed in specified compendia. PURPOSE: To assess whether compendia provide comprehensive, research-based, and timely information for off-label prescribing in oncology. DATA SOURCES: 6 drug compendia, English-language literature searches of MEDLINE and the Cochrane Central Register of Controlled Trials from 2006 and 2008, and American Society of Clinical Oncology annual meeting abstracts from 2004 to 2007. Data Assessment: The compendia's stated methods, literature related to off-label indications of 14 cancer drugs in 2006, updated literature related to 1 off-label indication between 2006 and 2008, and completeness of compendia content and citations were assessed. DATA SYNTHESIS: The compendia's stated methods varied greatly from their actual practices. Compendia cited little of the available evidence, often neither the most recent nor that of highest methodological quality. Compendia differed in evidence cited, terminology, detail, presentation, and referencing. For the 14 off-label indications studied, the compendia differed in the indications included and whether and how they recommended particular agents for particular types of cancer. Update schedules varied, and documentation practices made it difficult to determine whether and when compendia content was updated. For 1 indication, compendia citations did not increase between 2006 and 2008 despite newly published articles. LIMITATIONS: The 2006 analysis was limited to 14 off-label indications; the 2008 update examined 1 indication. Only off-label indications for cancer drugs were included, and results cannot be generalized to noncancer drugs or indications. CONCLUSION: Oncologists rely on compendia for up-to-date access to evidence and reimbursement information for off-label indications. Current compendia lack transparency, cite little current evidence, and lack systematic methods to review or update evidence.

Quality management of potential chemotherapy-induced neutropenic complications: evaluation of practice in an academic medical center.

GOALS: Management of the risk of potential chemotherapy-induced neutropenic complications such as febrile neutropenia (FN) and severe neutropenia (SN) is a quality of care priority. How frequently does care at our institution conform to established guidelines? MATERIALS AND METHODS: This retrospective chart review study included a random sample of 305 cancer patients receiving care at a single US academic medical center. Abstracted data included demographics, risk factors, and outcome variables (e.g., development of FN/SN, administration of myeloid growth factors). To evaluate quality of care, we assessed conformance between actual practice and established clinical practice guidelines for the use of myeloid growth factors from the National Comprehensive Cancer Network (NCCN). MAIN RESULTS: Of the 305 cases reviewed, 8% were classified as low risk (<10%), 48% as intermediate risk (10-20%), and 44% as high risk (>20%), using the risk classifications in the NCCN guidelines modified to accommodate illness and other risk factors. Thirty-four percent received prophylactic administration of myeloid growth factors. Half of the cases had adequate documentation of mid-cycle absolute neutrophil count to determine whether FN/SN developed. Among these cases with adequate documentation, 21% developed FN/SN. Use of growth factors did not conform to established quality guidelines. Overall, 77 of 133 (58%) high-risk cases received myeloid growth factors, whereas six of 25 (24%) low-risk cases received myeloid growth factors. CONCLUSIONS: Routine clinical practice in this academic oncology setting was poorly aligned with established guidelines; there is substantial opportunity to standardize clinical strategies and increase conformance with evidence-based guidelines.

Management of dyspnea in patients with chronic obstructive pulmonary disease.

A progressive and debilitating illness, chronic obstructive pulmonary disease (COPD) has major worldwide impact. In addition to the care for underlying causes of disease, COPD treatment involves palliative intervention to address associated symptoms; in later stages of disease, when the underlying disease has been maximally treated, symptom management assumes primacy as the goal of care. Dyspnea is the most distressing symptom experienced by COPD patients. When dyspnea cannot be relieved by traditional COPD management strategies (i.e., "refractory dyspnea"), the goal of care shifts from prolonged survival to minimized symptoms, improved function, and enhanced quality of life. Numerous pharmacologic and non-pharmacologic interventions are available to achieve these goals, but supporting evidence is variable. This review summarizes options for managing refractory dyspnea in COPD patients, referring to the available evidence and highlighting areas for further investigation. Topics include oxygen, opioids, psychotropic drugs, inhaled frusemide, Heliox28, nutrition, psychosocial support, and breathing techniques.

Targeted investment improves access to hospice and palliative care.

CONTEXT: Availability of hospice and palliative care is increasing, despite lack of a clear national strategy for developing and evaluating their penetration into and impact on the target population. OBJECTIVES: To determine whether targeted investment (i.e., strategic grants made by one charitable foundation) in hospice and palliative care in one U.S. state (North Carolina [NC]) led to improved access to end-of-life care services as indicated by hospice utilization. METHODS: Access was measured by the death service ratio (DSR), defined as the proportion of people who died and were served by hospice for at least one day before death. Calculation of the DSR is based on counts of patients accessing hospice by county in a given year (numerator) and U.S. Census projected population data for that county (denominator). Multilevel modeling was the primary analytic strategy used to generate two models: 1) comparison of the DSR in counties with vs. without philanthropic funding and 2) relationship between years since receipt of a philanthropic grant and DSR. RESULTS: In NC, the average DSR increased from 20.7% in 2003 to 35.8% in 2009 (55% increase). In 2009, 82 of 100 NC counties had a DSR below the U.S. average (41.6%). In Model 1, significant associations were found between county population and DSR (P=0.03) and between receipt of philanthropic funding and DSR (P=0.01); on average, funded counties had a DSR that was 2.63 percentage points higher than unfunded counties. CONCLUSION: Receipt of philanthropic funding appeared to be associated with improved access to palliative care and hospice services in NC.

Key characteristics of palliative care studies reported in the specialized literature.

CONTEXT: Although research activity in palliative care is rapidly increasing, the composition of published studies--in terms of significant research characteristics--has not yet been well described. OBJECTIVES: To describe the topics of and funding for palliative care studies reported in the three hospice and palliative care journals with the highest impact factors (Journal of Pain and Symptom Management, Palliative Medicine, and Journal of Palliative Medicine). METHODS: This was a substudy of a larger bibliographic study. The targeted journals were searched for 2007 using a previously validated Ovid MEDLINE filter for palliative care. All empirical palliative care studies were included. Articles were classified according to topics (palliative care patient, caregiver/family, health professional, service provision, tool development, healthy volunteer, medication compatibility, community), study type (intervention, nonintervention), country of origin, and funding source (pharmaceutical company, other funder, unfunded). RESULTS: Of 409 citations identified, the search yielded 189 eligible articles. Most articles were descriptive/observational. Approximately half were unfunded. Caregivers, healthy volunteers, and health service research were the least frequent topics for research. Only five randomized controlled trials were reported. CONCLUSION: Although there is a broad range of research undertaken in palliative care, few studies generate high-level evidence, with data showing a relative lack of funding for hospice and palliative care studies.

Refining a checklist for reporting patient populations and service characteristics in hospice and palliative care research.

CONTEXT: In specialist hospice and palliative care services, variations occur in diagnoses and prognoses of subpopulations referred, service configuration, and the health systems delivering care. These three levels of variation limit the ability to generalize study findings. OBJECTIVES: This article reports on coding one year of palliative care research using a previously developed checklist. The aims were to 1) quantify current reporting of factors related to generalizability in specialist palliative care research; 2) review and potentially refine the checklist in light of the first aim; 3) demonstrate the feasibility of collecting these data; and 4) set out simple processes to aid researchers in reporting, and clinicians in applying, new research evidence in hospice and palliative care. METHODS: A previously published checklist (five domains, 14 core subdomains, and 24 noncore subdomains) was used to code all research articles (n=189) published in 2007 in the three leading palliative care research journals. RESULTS: The most frequently reported subdomains were patient age, gender, and diagnosis; model of service delivery; and patient performance status. Data in subdomains, including time from referral to death, socioeconomic indices, and ethnicity, were rarely reported; none reported whole-of-service or whole-of-population data. In total, 2646 (189×14) core subdomains could have been reported. Data were provided in 28% (746/2646). CONCLUSION: Checklists such as the Consolidated Standards of Reporting Trials evaluate study design, focusing mainly on internal validity. The proposed checklist deals with specific content of hospice and palliative care, focusing on external validity.

Dyspnea review for the palliative care professional: treatment goals and therapeutic options.

Although dyspnea is frequently encountered in the palliative care setting, its optimal management remains uncertain. Clinical approaches begin with accurate assessment, as delineated in part one of this two-part series. Comprehensive dyspnea assessment, which encompasses the physical, emotional, social, and spiritual aspects of this complex symptom, guide the clinician in choosing therapeutic approaches herein presented as part two. Global management of dyspnea is appropriate both as complementary to disease-targeted treatments that target the underlying etiology, and as the sole focus when the symptom has become intractable, disease is maximally treated, and goals of care shift to comfort and quality of life. In this setting, current evidence supports the use of oral or parenteral opioids as the mainstay of dyspnea management, and of inhaled furosemide and anxiolytics as adjuncts. Nonpharmacologic interventions such as acupuncture and pulmonary rehabilitation have potential effectiveness, although further research is needed, and use of a simple fan warrants consideration given its potential benefit and minimal burden and cost.

Demonstration of a sustainable community-based model of care across the palliative care continuum.

CONTEXT: In the U.S., the number of hospital-based palliative care programs has increased rapidly, but availability of outpatient palliative care remains limited. Multiple barriers impede the financial viability of these programs. Four Seasons, a nonprofit organization in western North Carolina, delivers a full spectrum of palliative care in hospitals, nursing homes, assisted living facilities, patients' homes, and outpatient clinics; its catchment area encompasses approximately 350,000 people. Initially focused on hospice care, Four Seasons added its palliative care program in 2003. Before the inquiry described herein, financial losses from outpatient palliative care (2003-2008) were escalating. OBJECTIVES: We explored organizational and financial barriers to sustainability of palliative care, so as to 1) identify reasons for financial losses; 2) devise and implement solutions; and 3) develop a sustainable model for palliative care delivery across settings, including the outpatient setting. METHODS: In 2008, Four Seasons's palliative care program served 305 patients per day (average) with 10.5 providers (physicians, nurse practitioners, and physician assistants); financial losses approached $400,000 per year. We used Quality Assessment and Performance Improvement cycles to identify challenges to and inefficiencies in service provision, developed targeted strategies for overcoming identified barriers to cost-efficiency, instituted these measures, and tracked results. RESULTS: In 2011, Four Seasons served 620 palliative care patients per day (average) with 14 providers; financial losses decreased by 40%. CONCLUSION: With health care reform promoting integration of care across settings, outpatient palliative care will gain importance in the health care continuum. Process changes can help reduce financial losses that currently impede outpatient palliative care programs.

True translational research: bridging the three phases of translation through data and behavior.

Translational medicine has yet to deliver on its vast potential. Obstacles, or "blocks," to translation at three phases of research have impeded the application of research findings to clinical needs and, subsequently, the implementation of newly developed interventions in patient care. Recent federal support for comparative effectiveness research focuses attention on the clinical relevance of already-developed diagnostic and therapeutic interventions and on translating interventions found to be effective into new population-level strategies for improving health-thereby overcoming blocks at one end of the translational continuum. At the other end, while there is a preponderance of federal funding underwriting basic science research, further improvement is warranted in translating results of basic research into clinical applications and in integrating the basic sciences into the translational continuum. With its focus on the human and interactional aspects of health, medical practice, and healthcare delivery systems, behavioral medicine, itself a component of translational medicine, can inform this process.

International perspective: outcomes of palliative oncology.

Accompanying the ascendance of cancer as a leading cause of death worldwide is a new set of global health priorities focused on palliative care--the relief of symptoms and suffering, optimization of functional status, and quality of life for those with advanced, potentially life-limiting illnesses. In high-income countries, palliative care improves outcomes for patients, caregivers, provider organizations, and health systems. Data are not yet available to demonstrate similar benefits in low- and middle-income countries, where access to even the most basic palliative interventions (eg, opioids for pain management) is inadequate and unevenly distributed. This article describes current global disparities in the availability of palliative care. We make the case for international prioritization of palliative care as a critical strategy for improving outcomes for people with cancer and their caregivers worldwide.

Development of a health information technology-based data system in community-based hospice and palliative care.

BACKGROUND: Few hospice and palliative care organizations use health information technology (HIT) for data collection and management; the feasibility and utility of a HIT-based approach in this multi-faceted, interdisciplinary context is unclear. PURPOSE: To develop a HIT-based data infrastructure that serves multiple hospice and palliative care sites, meeting clinical and administrative needs with data, technical, and analytic support. METHODS: Through a multi-site academic/community partnership, a data infrastructure was collaboratively developed, pilot-tested at a community-based site, refined, and demonstrated for data collection and preliminary analysis. Additional sites, which participated in system development, became prepared to contribute data to the growing aggregate database. RESULTS: Electronic data collection proved feasible in community-based hospice and palliative care. The project highlighted "success factors" for implementing HIT in this field: engagement of site-based project "champions" to promote the system from within; involvement of stakeholders at all levels of the organization, to promote culture change and buy-in; attention to local needs (e.g., data for quality reporting) and requirements (e.g., affordable cost, efficiency); consideration of practical factors (e.g., potential to interfere with clinical flow); provision of adequate software, technical, analytic, and statistical support; availability of flexible HIT options (e.g., different data-collection platforms); and adoption of a consortium approach in which sites can support one another, learn from each others' experiences, pool data, and benefit from economies of scale. CONCLUSIONS: In hospice and palliative care, HIT-based data collection/management has potential to generate better understanding of populations and outcomes, support quality assessment/quality improvement, and prepare sites to participate in research.