ABSTRACT
Urgent responses to the COVID-19 pandemic depend on increased collaboration and sharing of data, models, and resources among scientists and researchers. In many scientific fields and disciplines, institutional norms treat data, models, and resources as proprietary, emphasizing competition among scientists and researchers locally and internationally. Concurrently, long-standing norms of open data and collaboration exist in some scientific fields and have accelerated within the last two decades. In both cases-where the institutional arrangements are ready to accelerate for the needed collaboration in a pandemic and where they run counter to what is needed-the rules of the game are "on the table" for institutional-level renegotiation. These challenges to the negotiated order in science are important, difficult to study, and highly consequential. The COVID-19 pandemic offers something of a natural experiment to study these dynamics. Preliminary findings highlight: the chilling effect of politics where open sharing could be expected to accelerate; the surprisingly conservative nature of contests and prizes; open questions around whether collaboration will persist following an inflection point in the pandemic; and the strong potential for launching and sustaining pre-competitive initiatives.
ABSTRACT
BACKGROUND: Outpatient palliative care clinics facilitate early referral and are associated with improved outcomes in cancer patients. However, appropriate candidates for outpatient palliative care referral and optimal timing remain unclear. We conducted a systematic review of the literature to identify criteria that are considered when an outpatient palliative cancer care referral is initiated. METHODS: We searched Ovid MEDLINE (1948-2013 citations) and Ovid Embase (1947-2015 citations) for articles related to outpatient palliative cancer care. Two researchers independently reviewed each citation for inclusion and extracted the referral criteria. The interrater agreement was high (κ = 0.96). RESULTS: Of the 186 publications in our initial search, 21 were included in the final sample. We identified 20 unique referral criteria. Among these, 6 were recurrent themes, which included physical symptoms (n = 13 [62%]), cancer trajectory (n = 13 [62%]), prognosis (n = 7 [33%]), performance status (n = 7 [33%]), psychosocial distress (n = 6 [29%]), and end-of-life care planning (n = 5 [24%]). We found significant variations among the articles regarding the definition of advanced cancer and the assessment tools for symptom/distress screening. The Edmonton Symptom Assessment Scale (n = 7 [33%]) and the distress thermometer (n = 2 [10%]) were used most often. Furthermore, there was a lack of consensus in the cutoffs in symptom assessment tools and timing for outpatient palliative care referral. CONCLUSION: This systematic review identified 20 criteria including 6 recurrent themes for outpatient cancer palliative care referral. It highlights the significant heterogeneity regarding the timing and process for referral and the need for further research to develop standardized referral criteria. IMPLICATIONS FOR PRACTICE: Outpatient palliative care clinics improve patient outcomes; however, it remains unclear who is appropriate for referral and what is the optimal timing. A better understanding of the referral criteria would help (a) referring clinicians to identify appropriate patients for palliative care interventions, (b) administrators to assess their programs with set benchmarks for quality improvement, (c) researchers to standardize inclusion criteria, and (d) policymakers to develop clinical care pathways and allocate appropriate resources. This systematic review identified 20 criteria including 6 recurrent themes for outpatient palliative cancer care referral. It represents the first step toward developing standardized referral criteria.
