FRAMING HEALTH MATTERS
Practice-Based Research Priorities for Palliative Care: Results From a Research-to-Practice Consensus Workshop Karl Pillemer, PhD, Emily K. Chen, PhD, Catherine Riffin, MA, Holly Prigerson, PhD, Leslie Schultz, BA and M. C. Reid, MD, PhD
We employed the research-to-practice consensus workshop (RTP; workshops held in New York City and Tompkins County, New York, in 2013) model to merge researcher and practitioner views of translational research priorities in palliative care. In the RTP approach, a diverse group of frontline providers generates a research agenda for palliative care in collaboration with researchers. We have presented the major workshop recommendations and contrasted the practicebased research priorities with those of previous consensus efforts. We uncovered notable differences and found that the RTP model can produce unique insights into research priorities. Integrating practitioner-identified needs into research priorities for palliative care can contribute to addressing palliative care more effectively as a public health issue. (Am J Public Health. 2015;105: 2237–2244. doi:10.2105/AJPH.2015.302675)
Over the past 2 decades, palliative care has become established as a promising approach for addressing the needs of individuals with life-threatening illnesses from a holistic, interdisciplinary perspective. For this project, we defined palliative care as an approach that improves the quality of life of patients and families facing the problems encountered in life-threatening illness by preventing and relieving suffering. Core components of palliative care include providing relief from pain and other distressing symptoms, affirming dying as a normal process, integrating psychological and spiritual aspects of care, enhancing the quality of life of patients, and offering support systems to patients and their families to help them live as fully as possible until death occurs. Research suggests that palliative care results in positive patient outcomes, greater patient and family satisfaction, and significant cost savings.1,2 The American Public Health Association, the World Health Organization, and the Institute of Medicine3---6 have identified the development of a robust palliative care delivery system as a key public health issue because of the documented ability of palliative care to deliver effective and efficient patientand symptom-focused care to a growing population in need. In its 2013 report the American Public Health Association specifically detailed the
public health implications of palliative care, acknowledged the growing burden of advanced chronic illness and disease in older adults, and recommended key steps to address the problem. This policy statement called for federal, state, and local efforts to promote effective symptom management in populations with serious illness or at the end of life. Other recommended initiatives included the development of a palliative care workforce, educational programs to improve uptake and use of palliative and hospice care, and research funding to support the expansion of palliative care initiatives. Achieving these goals will require moving beyond traditional medical practices to include both policies and initiatives at the public health level. Despite the potential of palliative care to address the mental and physical health needs of individuals with advanced illness, significant knowledge gaps impede its reach and effectiveness. Reports from scientific bodies and consensus workshops have highlighted weaknesses in the literature and called for more research on palliative care and improved research methods.7--10 Thus, although both interest in and demand for palliative care are increasing, reviews of the knowledge base continue to lament the lack of research on many key issues.11,12 Especially urgent is a research agenda that fits most closely with the needs of providers
November 2015, Vol 105, No. 11 | American Journal of Public Health
who deliver palliative care. The systematic engagement of community practitioners in a consensus process can lead to particularly useful and actionable recommendations for research,13---15 which are greatly needed at this stage in the development of the field. Therefore, to shed new light on research priorities in palliative care, we used a structured, participatory method designed to solicit practitioner input on research priorities: the research-topractice consensus workshop (RTP) model.16 We employed the RTP approach to identify knowledge gaps and types of studies that should be conducted to improve providers’ ability to deliver palliative care most effectively. This model harnesses practice wisdom by engaging clinicians, agency staff, and other practitioners with researchers in a process of articulating and refining research questions and research priorities that honors scientific expertise and practice wisdom.
EXTENDING COMMUNITY– RESEARCHER PARTNERSHIPS TO SCIENTIFIC AGENDA SETTING In recent years, the concept of “practicebased evidence” has come into common use, emphasizing the flow of knowledge from practitioners to researchers.17,18 In addition, community-based participatory research has become widely recognized as an effective methodology whereby researchers and community members work together as partners in the research process.19---21 The literature on community-based participatory research and related methodologies emphasizes the critical role of stakeholders in determining the specific topic for a particular study in their community, deciding on methods and measures to be used in the project, interpreting results, and disseminating findings to community members. Despite these advances, the systematic engagement of practitioners with researchers in
Pillemer et al. | Peer Reviewed | Palliative Care | 2237
FRAMING HEALTH MATTERS
setting broad agendas for research on many public health problems is unusual. Following community-based participatory research principles,22 we propose that practitioners, as eventual end users of research, be consulted for guidance in establishing research priorities. Aligning research priorities with the needs of palliative care providers can help maximize the immediate public health benefit of scientific investigation, ultimately benefitting patients and their families. Additionally, the recent rapid growth of palliative care programs suggests that practitioners may be facing challenges of which researchers are not aware and that they have knowledge about promising practices that are worthy of formal evaluation. Therefore, systematically and intentionally integrating the needs and knowledge of frontline palliative care practitioners with scientific experts is likely to generate proposals for innovative studies that ultimately improve practice. Similar efforts are needed to engage palliative care patients and their families in setting an agenda for research. Because the RTP model was designed and tested for use with researchers and practitioners, it was not possible to incorporate patients and family members into the workshop, but such involvement is highly desirable.
CONCEPTUAL FRAMEWORK FOR THE RESEARCH-TO-PRACTICE CONSENSUS WORKSHOP MODEL Researchers from a wide variety of fields, including public health, management, health services research, and psychotherapy, have highlighted a researcher---practitioner gap. Many analysts have attempted to identify the sources of such tensions and resulting problems in collaboration, including divergent priorities, views of the time needed to generate knowledge, communication practices, and the value given to knowledge for helping individuals in need.23---27 Less common are documented attempts to bridge this gap in perspectives or worldviews effectively. The RTP model addresses this issue explicitly by promoting knowledge translation through structured engagement and dialogue between researchers and practitioners and encouraging participants to reflect on research-based knowledge and how it might
2238 | Palliative Care | Peer Reviewed | Pillemer et al.
improve daily practice. Thus, the model responds to calls for efforts that promote exchange and reciprocity between those who create new knowledge and those who use it. Rather than focus on divergence and debate between researchers and practitioners, the RTP approach identifies points of agreement between the 2 groups about research priorities. The overarching goal is fostering productive dialogue by creating an environment that is hospitable to integrating practitioner perspectives with scientific evidence. The RTP model draws on elements of the traditional consensus conference, usually conducted by scientific organizations and governments,28---30 but employs community-based participatory research principles to bridge the gap between research and practice communities. First, participation of practitioners is intentional and systematic throughout the entire process. Conventional consensus workshops typically limit the practitioner role to commenting on recommendations from the scientific panel. By contrast, several features distinguish the RTP model from this approach. Community partners from health and social service agencies are involved in planning the workshop from its inception, serve as expert presenters at the workshop, and are full participants in generating the research agenda. Second, important scientific information is provided to practitioners in nontechnical language before the conference, thereby reducing the knowledge gap with researchers. Third, the workshop is framed as an opportunity to tap their expertise on how research can address their real-world concerns; respect for practical knowledge and experience is emphasized. Finally, the conference avoids a potential difficulty: that practitioners will focus only on their immediate needs or programs without regard to adding to scientific knowledge. It does so by including researchers in the conference who are able to advocate their views about scientific priorities and by achieving consensus between both groups on the research recommendations.
topics, including fall prevention,31 social isolation,32 and environmental sustainability and health33 (Sabir et al.16 provide a detailed description of the RTP model; a manual for conducting workshops is available by contacting K. P.). We conducted 2 RTP conferences in spring 2013, one in New York City and one in Tompkins County, New York. We followed the steps and components of the process in both locations. No substantive differences in the recommendations emerged between the 2 sites, and we pooled recommendations from both workshops into a single research agenda.
METHODS
Identify a Panel of Expert Discussants
On the basis of the framework, the RTP model has been used successfully to generate consensus research agendas on a variety of
In each location, 2 palliative care researchers and 2 frontline practitioners working in palliative care settings served as presenters, offering a response to the background article.
Prepare a Nontechnical Background Article The project team developed a background article that reviewed major issues in palliative care and summarized recommendations for research priorities from the scientific community. The review was on the basis of (1) research recommendations in systematic review articles on palliative care published between 2005 and 2012 (process described fully elsewhere34), and (2) a national survey of “thought leaders” on palliative care, asking respondents to list and rank highest priorities for palliative care research.35 We provided this report to RTP participants before the workshop, and it formed a basis for discussion (the background article is available as a supplement to the online version of this article at http:// www.ajph.org). In preparation for the workshop, participants were asked to consider the following questions: d
d
d
d
Do you agree with some of the knowledge gaps identified by researchers? If so, how high a priority would you place on research on those topics? Do you disagree with any of the researchers’ priorities for new knowledge? What’s missing? Did the researchers fail to mention things we really need to know to create optimal palliative care services?
We used these questions to frame discussion in the workshop.
American Journal of Public Health | November 2015, Vol 105, No. 11
FRAMING HEALTH MATTERS
The researchers underscored and clarified the scientific viewpoint on the identified research priorities; the practitioners provided a response from the perspective of service providers. A goal of the initial presentations was to emphasize the equal value of the views of scientists and practitioners and to model respectful and productive practitioner---researcher dialogue.
Convene Research-to-Practice Consensus Workshops Standards for the selection of consensus workshop participants do not exist36; we therefore relied on the common practice of identifying individuals with significant background and expertise in the area of concern. We recruited practice participants through the project’s network of community partners, with the goal of assembling individuals with a diverse range of expertise. Selected practitioners were exclusively involved in direct service provision, thereby allowing a focus on their insights in real-world settings. We invited researchers who had expertise in palliative and end-of-life issues from the social sciences, health services research, and clinical medical research. Participant characteristics are described in Table 1. All participants had interests related to palliative or end-of-life care. Practitioners were involved in the delivery of palliative or end-oflife care or in a few cases had relevant experience in the field of aging services. Four job categories predominated among practitioners: physicians, nurses, social workers, and health and social service agency administrators. This range of expertise allowed input from a useful range of practice perspectives. Researchers came from academic medical settings, general academic settings (e.g., sociology, gerontology, human development), and agencies (researchers affiliated with providers). Physician specialties in both groups were primarily palliative care, hospice care, geriatrics, and oncology. For both groups, we targeted individuals with significant experience; the majority of participants had worked for 15 or more years in the field. Past experience with the RTP model shows that the half-day meeting is optimal for balancing the busy schedules of direct service providers with the need for sufficient time to
develop recommendations. Following an overview of the agenda and the discussants’ presentations, we assigned workshop participants to predetermined small groups that purposively included both practitioners and researchers. The moderator was an expert gerontological social worker with extensive experience in both practice with older people and gerontological research. The moderator described the expectations for the groups: that they would generate and prioritize a list of research recommendations for the field of palliative care. The research team designated a facilitator for each group, who answered questions about the task and asked clarifying questions of the small group participants to accurately record recommendations. The small groups met for 45 minutes, after which we posted the lists of recommendations around the room. Each small group read aloud and briefly described its list of recommendations to the larger group, which allowed further clarification and discussion. The moderator led the group in combining or eliminating items across the lists when participants generally agreed that the recommendations were similar. The research team took detailed notes on these deliberations. At the close of the workshop, we invited all participants to nominate their top choices by affixing stickers to the lists, which we in turn used to identify top recommendations.
RESULTS The RTP process across the 2 research sites resulted in a list of 10 consensus-based recommendations for palliative care research to address knowledge gaps judged to be of high priority to the practitioners. Research recommendations clustered into 3 categories, mapping onto 3 domains that palliative care as
TABLE 1—Consensus Workshop Participant Characteristics: New York City and Tompkins County, NY, Spring 2013 Characteristic
No. (%)
Researchers (n = 18) Nonclinician
12 (67)
Clinician
6 (33)
Research experience, y > 15 7–15
10 (59) 5 (24)
15
37 (57)
7–15
22 (34)
Practice-Based Research Priorities for Palliative Care: Results From a Research-to-Practice Consensus Workshop Karl Pillemer, PhD, Emily K. Chen, PhD, Catherine Riffin, MA, Holly Prigerson, PhD, Leslie Schultz, BA and M. C. Reid, MD, PhD
We employed the research-to-practice consensus workshop (RTP; workshops held in New York City and Tompkins County, New York, in 2013) model to merge researcher and practitioner views of translational research priorities in palliative care. In the RTP approach, a diverse group of frontline providers generates a research agenda for palliative care in collaboration with researchers. We have presented the major workshop recommendations and contrasted the practicebased research priorities with those of previous consensus efforts. We uncovered notable differences and found that the RTP model can produce unique insights into research priorities. Integrating practitioner-identified needs into research priorities for palliative care can contribute to addressing palliative care more effectively as a public health issue. (Am J Public Health. 2015;105: 2237–2244. doi:10.2105/AJPH.2015.302675)
Over the past 2 decades, palliative care has become established as a promising approach for addressing the needs of individuals with life-threatening illnesses from a holistic, interdisciplinary perspective. For this project, we defined palliative care as an approach that improves the quality of life of patients and families facing the problems encountered in life-threatening illness by preventing and relieving suffering. Core components of palliative care include providing relief from pain and other distressing symptoms, affirming dying as a normal process, integrating psychological and spiritual aspects of care, enhancing the quality of life of patients, and offering support systems to patients and their families to help them live as fully as possible until death occurs. Research suggests that palliative care results in positive patient outcomes, greater patient and family satisfaction, and significant cost savings.1,2 The American Public Health Association, the World Health Organization, and the Institute of Medicine3---6 have identified the development of a robust palliative care delivery system as a key public health issue because of the documented ability of palliative care to deliver effective and efficient patientand symptom-focused care to a growing population in need. In its 2013 report the American Public Health Association specifically detailed the
public health implications of palliative care, acknowledged the growing burden of advanced chronic illness and disease in older adults, and recommended key steps to address the problem. This policy statement called for federal, state, and local efforts to promote effective symptom management in populations with serious illness or at the end of life. Other recommended initiatives included the development of a palliative care workforce, educational programs to improve uptake and use of palliative and hospice care, and research funding to support the expansion of palliative care initiatives. Achieving these goals will require moving beyond traditional medical practices to include both policies and initiatives at the public health level. Despite the potential of palliative care to address the mental and physical health needs of individuals with advanced illness, significant knowledge gaps impede its reach and effectiveness. Reports from scientific bodies and consensus workshops have highlighted weaknesses in the literature and called for more research on palliative care and improved research methods.7--10 Thus, although both interest in and demand for palliative care are increasing, reviews of the knowledge base continue to lament the lack of research on many key issues.11,12 Especially urgent is a research agenda that fits most closely with the needs of providers
November 2015, Vol 105, No. 11 | American Journal of Public Health
who deliver palliative care. The systematic engagement of community practitioners in a consensus process can lead to particularly useful and actionable recommendations for research,13---15 which are greatly needed at this stage in the development of the field. Therefore, to shed new light on research priorities in palliative care, we used a structured, participatory method designed to solicit practitioner input on research priorities: the research-topractice consensus workshop (RTP) model.16 We employed the RTP approach to identify knowledge gaps and types of studies that should be conducted to improve providers’ ability to deliver palliative care most effectively. This model harnesses practice wisdom by engaging clinicians, agency staff, and other practitioners with researchers in a process of articulating and refining research questions and research priorities that honors scientific expertise and practice wisdom.
EXTENDING COMMUNITY– RESEARCHER PARTNERSHIPS TO SCIENTIFIC AGENDA SETTING In recent years, the concept of “practicebased evidence” has come into common use, emphasizing the flow of knowledge from practitioners to researchers.17,18 In addition, community-based participatory research has become widely recognized as an effective methodology whereby researchers and community members work together as partners in the research process.19---21 The literature on community-based participatory research and related methodologies emphasizes the critical role of stakeholders in determining the specific topic for a particular study in their community, deciding on methods and measures to be used in the project, interpreting results, and disseminating findings to community members. Despite these advances, the systematic engagement of practitioners with researchers in
Pillemer et al. | Peer Reviewed | Palliative Care | 2237
FRAMING HEALTH MATTERS
setting broad agendas for research on many public health problems is unusual. Following community-based participatory research principles,22 we propose that practitioners, as eventual end users of research, be consulted for guidance in establishing research priorities. Aligning research priorities with the needs of palliative care providers can help maximize the immediate public health benefit of scientific investigation, ultimately benefitting patients and their families. Additionally, the recent rapid growth of palliative care programs suggests that practitioners may be facing challenges of which researchers are not aware and that they have knowledge about promising practices that are worthy of formal evaluation. Therefore, systematically and intentionally integrating the needs and knowledge of frontline palliative care practitioners with scientific experts is likely to generate proposals for innovative studies that ultimately improve practice. Similar efforts are needed to engage palliative care patients and their families in setting an agenda for research. Because the RTP model was designed and tested for use with researchers and practitioners, it was not possible to incorporate patients and family members into the workshop, but such involvement is highly desirable.
CONCEPTUAL FRAMEWORK FOR THE RESEARCH-TO-PRACTICE CONSENSUS WORKSHOP MODEL Researchers from a wide variety of fields, including public health, management, health services research, and psychotherapy, have highlighted a researcher---practitioner gap. Many analysts have attempted to identify the sources of such tensions and resulting problems in collaboration, including divergent priorities, views of the time needed to generate knowledge, communication practices, and the value given to knowledge for helping individuals in need.23---27 Less common are documented attempts to bridge this gap in perspectives or worldviews effectively. The RTP model addresses this issue explicitly by promoting knowledge translation through structured engagement and dialogue between researchers and practitioners and encouraging participants to reflect on research-based knowledge and how it might
2238 | Palliative Care | Peer Reviewed | Pillemer et al.
improve daily practice. Thus, the model responds to calls for efforts that promote exchange and reciprocity between those who create new knowledge and those who use it. Rather than focus on divergence and debate between researchers and practitioners, the RTP approach identifies points of agreement between the 2 groups about research priorities. The overarching goal is fostering productive dialogue by creating an environment that is hospitable to integrating practitioner perspectives with scientific evidence. The RTP model draws on elements of the traditional consensus conference, usually conducted by scientific organizations and governments,28---30 but employs community-based participatory research principles to bridge the gap between research and practice communities. First, participation of practitioners is intentional and systematic throughout the entire process. Conventional consensus workshops typically limit the practitioner role to commenting on recommendations from the scientific panel. By contrast, several features distinguish the RTP model from this approach. Community partners from health and social service agencies are involved in planning the workshop from its inception, serve as expert presenters at the workshop, and are full participants in generating the research agenda. Second, important scientific information is provided to practitioners in nontechnical language before the conference, thereby reducing the knowledge gap with researchers. Third, the workshop is framed as an opportunity to tap their expertise on how research can address their real-world concerns; respect for practical knowledge and experience is emphasized. Finally, the conference avoids a potential difficulty: that practitioners will focus only on their immediate needs or programs without regard to adding to scientific knowledge. It does so by including researchers in the conference who are able to advocate their views about scientific priorities and by achieving consensus between both groups on the research recommendations.
topics, including fall prevention,31 social isolation,32 and environmental sustainability and health33 (Sabir et al.16 provide a detailed description of the RTP model; a manual for conducting workshops is available by contacting K. P.). We conducted 2 RTP conferences in spring 2013, one in New York City and one in Tompkins County, New York. We followed the steps and components of the process in both locations. No substantive differences in the recommendations emerged between the 2 sites, and we pooled recommendations from both workshops into a single research agenda.
METHODS
Identify a Panel of Expert Discussants
On the basis of the framework, the RTP model has been used successfully to generate consensus research agendas on a variety of
In each location, 2 palliative care researchers and 2 frontline practitioners working in palliative care settings served as presenters, offering a response to the background article.
Prepare a Nontechnical Background Article The project team developed a background article that reviewed major issues in palliative care and summarized recommendations for research priorities from the scientific community. The review was on the basis of (1) research recommendations in systematic review articles on palliative care published between 2005 and 2012 (process described fully elsewhere34), and (2) a national survey of “thought leaders” on palliative care, asking respondents to list and rank highest priorities for palliative care research.35 We provided this report to RTP participants before the workshop, and it formed a basis for discussion (the background article is available as a supplement to the online version of this article at http:// www.ajph.org). In preparation for the workshop, participants were asked to consider the following questions: d
d
d
d
Do you agree with some of the knowledge gaps identified by researchers? If so, how high a priority would you place on research on those topics? Do you disagree with any of the researchers’ priorities for new knowledge? What’s missing? Did the researchers fail to mention things we really need to know to create optimal palliative care services?
We used these questions to frame discussion in the workshop.
American Journal of Public Health | November 2015, Vol 105, No. 11
FRAMING HEALTH MATTERS
The researchers underscored and clarified the scientific viewpoint on the identified research priorities; the practitioners provided a response from the perspective of service providers. A goal of the initial presentations was to emphasize the equal value of the views of scientists and practitioners and to model respectful and productive practitioner---researcher dialogue.
Convene Research-to-Practice Consensus Workshops Standards for the selection of consensus workshop participants do not exist36; we therefore relied on the common practice of identifying individuals with significant background and expertise in the area of concern. We recruited practice participants through the project’s network of community partners, with the goal of assembling individuals with a diverse range of expertise. Selected practitioners were exclusively involved in direct service provision, thereby allowing a focus on their insights in real-world settings. We invited researchers who had expertise in palliative and end-of-life issues from the social sciences, health services research, and clinical medical research. Participant characteristics are described in Table 1. All participants had interests related to palliative or end-of-life care. Practitioners were involved in the delivery of palliative or end-oflife care or in a few cases had relevant experience in the field of aging services. Four job categories predominated among practitioners: physicians, nurses, social workers, and health and social service agency administrators. This range of expertise allowed input from a useful range of practice perspectives. Researchers came from academic medical settings, general academic settings (e.g., sociology, gerontology, human development), and agencies (researchers affiliated with providers). Physician specialties in both groups were primarily palliative care, hospice care, geriatrics, and oncology. For both groups, we targeted individuals with significant experience; the majority of participants had worked for 15 or more years in the field. Past experience with the RTP model shows that the half-day meeting is optimal for balancing the busy schedules of direct service providers with the need for sufficient time to
develop recommendations. Following an overview of the agenda and the discussants’ presentations, we assigned workshop participants to predetermined small groups that purposively included both practitioners and researchers. The moderator was an expert gerontological social worker with extensive experience in both practice with older people and gerontological research. The moderator described the expectations for the groups: that they would generate and prioritize a list of research recommendations for the field of palliative care. The research team designated a facilitator for each group, who answered questions about the task and asked clarifying questions of the small group participants to accurately record recommendations. The small groups met for 45 minutes, after which we posted the lists of recommendations around the room. Each small group read aloud and briefly described its list of recommendations to the larger group, which allowed further clarification and discussion. The moderator led the group in combining or eliminating items across the lists when participants generally agreed that the recommendations were similar. The research team took detailed notes on these deliberations. At the close of the workshop, we invited all participants to nominate their top choices by affixing stickers to the lists, which we in turn used to identify top recommendations.
RESULTS The RTP process across the 2 research sites resulted in a list of 10 consensus-based recommendations for palliative care research to address knowledge gaps judged to be of high priority to the practitioners. Research recommendations clustered into 3 categories, mapping onto 3 domains that palliative care as
TABLE 1—Consensus Workshop Participant Characteristics: New York City and Tompkins County, NY, Spring 2013 Characteristic
No. (%)
Researchers (n = 18) Nonclinician
12 (67)
Clinician
6 (33)
Research experience, y > 15 7–15
10 (59) 5 (24)
15
37 (57)
7–15
22 (34)
