Building Strong Clinician-Researcher Collaborations for Successful Hospice and Palliative Care Research

Abstract

Hospice and palliative care research aim to build a knowledge base to guide high-quality care for people with serious illness and improve their quality of life. Considering its focus on patient and family caregiver’s experiences, hospice and palliative care research activities primarily take place in real-world clinical settings where seriously ill patients and their family caregivers receive care (e.g., nursing homes, clinics, inpatient units). Conducting research in these settings poses many challenges because researchers, clinicians, and administrators may have different priorities—and scientific control is difficult. Therefore, clinician-researcher-administrator collaboration in planning and conducting studies is critical for successful hospice and palliative care research. For an effective collaboration, clinicians, researchers, and site administrators must be considered equal partners. Each collaborator brings their unique expertise, knowledge, and skills that when combined can strengthen scientific rigor, feasibility, and success of the project, as well as have study outcomes be more translatable to real-world practice. However, little guidance exists to give actionable steps to build collaborative partnerships for hospice and palliative care researchers. The purpose of this paper is to describe the process of forming successful clinician-researcher-administrator collaborations through five phases of the research lifecycle: idea generation, partnership, proposal writing, research process, and dissemination. Exemplars are drawn from the authors’ experiences conducting collaborative research and highlight strategies and resources for successful hospice and palliative care collaborations.

INTRODUCTION

The field of hospice and palliative care aims to provide patient-centered, family-oriented, high-quality care for persons with serious illness. Research in this area has led to an increased understanding of serious illness and the development of high-quality interventions to improve care at the end of life.¹ To build the evidence base and guide such clinical practice, palliative care research often focuses on the experiences of patients and family caregivers and as a result, relies on data from people receiving care in community-based institutions. For this reason, studies often take place in real-world settings where patients live and receive care (e.g., homes, clinics, post-acute and long-term care, inpatient units). This necessitates close collaboration between clinicians, researchers and the sites where the research is conducted.

Successful collaboration among clinicians, researchers, and site administrators is a complicated task, but essential for conducting research most relevant to practice.^2,3 Each collaborator brings their unique expertise, knowledge, and skillsets to uniformly strengthen the study. Researchers can bring methodological and theoretical expertise, as well as the skill needed to design and conduct research efficiently and with scientific rigor. Clinicians and site administrators can, in turn, offer their expertise about the pragmatic aspects of the clinical setting where the research will be conducted, such as the rules, regulations, and realities of current practice. Further, clinicians and site administrators have expert knowledge about their patient population that is vital for planning and conducting successful studies, as well as recruiting participants. Inclusion of site administrators in practice-research collaboration is often overlooked, but they are major stakeholders, who oversee the practice operations, determine resource allocation, and assist with navigation of healthcare system processes that may have an effect on the success of research study activities.³

However, there is limited guidance for how to build relationships and collaborations between hospice and palliative care clinicians, researchers, and site administrators with different educational backgrounds, expertise, motivation, missions, roles, and functions.⁴ While some large palliative care research collaborative initiatives exist, most hospice and palliative care clinical investigators do not have access to these resources.^5,6 An informal 2018 survey of early career investigators and clinicians at the Annual Assembly of Hospice and Palliative Care meeting (N=50) revealed that 92% are interested in learning about how to conduct research in practice settings and ways to develop clinician-researcher collaborations. Recent empirical research further confirms the increasing interest and need to develop research-practice collaborations.⁷ The purpose of this paper is to illustrate the process of clinician-researcher-site administrator collaboration to enhance the value, quality, and productivity of research activities. This paper will present a guiding framework for successful collaboration and provide exemplars that highlight strategies that may be used to build a productive collaborative research relationship.

BUILDING COLLABORATION THROUGHOUT THE RESEARCH LIFECYCLE

The research lifecycle⁸ consists of multiple phases including generating ideas, developing partnerships, proposal writing, implementing the research process, and publication (Figure 1). The following aims to illuminate best practices of collaboration and how to navigate each phase based on existing literature and the authors’ own experiences conducting collaborative hospice and palliative care research.

Figure 1.

The Research Lifecyle⁸

Phase 1. Ideas—Turning a Clinical Problem into a Research Question

Ideally, collaboration begins from the first phase of the research lifecycle forming ideas and research questions that are of interest to all participating collaborators.⁹ Research questions can emerge from either practical problems that clinicians encounter or gaps in knowledge identified by researchers. A research question informs the design of the study; therefore, developing a specific and clear question is key for success. To develop and refine a research question, a comprehensive search and analysis of the literature relevant to the topic is essential. Researchers are trained with specific skillsets and have access to tools and resources necessary for conducting a comprehensive search and analysis of the literature relevant to the topic. Clinicians have knowledge and insights about current practice and clinical implications of the problem under question of which researchers may have limited understanding.

Identification, exploration, and engagement of potential collaborators from this early stage of research is advantageous not only to gain insights that would enhance the quality of research questions (e.g., supporting literature, insight about clinical reality) but also to gauge interest and explore potential collaboration on the topic. This is the time to start building a trusting relationship through thoughtful and respectful dialogue and brief, written summaries of ideas. Formal meetings with a note taker may help to explore collaborators’ ideas, expected next steps, and approximate project timeframe.

Phase 2. Partners -- Identify Stakeholders/Collaborators and Build Relationships/Assessing Research Readiness

Assessing research interest, readiness, and resource availability is crucial during the preliminary investigation of potential partnerships and collaboration (Box A).^10,11 For successful collaboration, the research project must align with the mission of the partnering organizations, have clinical relevance to the clinicians, and measure meaningful outcomes for patients and families. Conducting collaborator meetings with these partners to identify research and clinical knowledge, experience, roles, skills, and resources needed and available to complete the project is essential. The roles and level of involvement and contribution of each collaborator may vary by the phase of the research project.

Box A. Assessing Research Readiness¹⁵.

Organizational factors (e.g., management support and resource availability) are crucial to project implementation Adequate access to the target population? Consider any prior research activity at the organization (e.g. leadership, funding, type of study) Do they have anyone dedicated to research endeavors? How will this fit into their mission? Does it have clinical relevance for the staff?

Early on, potential collaborators should self-identify how they can contribute to the project’s success. Then, roles (e.g., content experts, methodologists, organizational champions) can be defined and negotiated to ensure that each member’s skills are recognized, valued, and utilized effectively. Collaborators who could fill these gaps may include other clinical members (e.g., clinical educator, site leaders, nurse case manager, pharmacist); family members or care partners in the target population; community members representing or having vested interest in the target population or topic area; or researchers with content and/or methodological knowledge and expertise (e.g., statistician, expert in pragmatic clinical trials, qualitative research expert).

A collaborative research team should be balanced with members who have interest and knowledge of the research topic and team members who can serve as influential champions in their respective settings.¹² Existing relationships such as academic-practice affiliation or community partner organizations, when available, should also be leveraged. In this way, collaboration provides an opportunity to learn from each other.

Meetings with potential collaborators may include virtual introductions, but an initial face-to-face meeting is recommended, if possible.¹³ Other suggestions for fostering strong and lasting partnerships within these early phases include clear communication, scheduled team meetings, and well-defined expectations. Workload and reimbursement issues along with team member responsibilities need to be clearly defined and negotiated early in the partnership building process. Further, explicit project goals that include research and clinical benchmarks, study timelines, implementation, evaluation details, and preliminary plans for dissemination should also be developed during these early meetings.

Phase 3: Proposal Writing – Consider Appropriate Methods and Meaningful Outcomes for All

The next step in bringing a collaborative research project to fruition is writing and submitting a research proposal.¹⁴ Identification of potential funding for the project is a necessary aspect of proposal development. Many sources of funding exist to support hospice and palliative care research. Examples of funding support for hospice and palliative care research are found in Box B and include federal support, private foundations, institutional intramural support, and disease specific philanthropic organizations.

Box B. Hospice and Palliative Research Funders.

HPNF grants: https://www.advancingexpertcare.org/HPNA/HPNF/Scholarships/Grants_Scholarships.aspx PCRC pilot funding: https://palliativecareresearch.org/funding-opportunities/pilot-funding-opportunities NPCRC for more senior/career development: http://www.npcrc.org/content/19/Funding-Opportunities.aspx NIH (fellowships, CDA, large grants): https://grants.nih.gov/funding/index.htm ACS: https://www.cancer.org/research/we-fund-cancer-research/apply-research-grant.html

Each collaborator can contribute to proposal development. Researchers often complete the scientific writing, designing the approach including specific methodological considerations (i.e., sample size calculations, identification of survey instruments, tools, and outcome measures), offer knowledge of funding opportunities, strategies, and administrative research support. Site administrators and clinicians have operational and institutional knowledge around feasibility, local and national guidelines that may need to be considered, and baseline sample or program data to inform the proposal. Clinicians can identify access and recruitment of subjects for reliable data collection and considerations for implications and translation of the project back to clinical practice. Any discipline that is expected to assist in the study (e.g., nursing, respiratory therapy, social work, pastoral care, pharmacy) should have the opportunity to provide input into the plan to ensure that interventions and/or data collection are feasible and not too burdensome.

Ensuring cohesiveness among the many components of a proposal is key. Aligning details of proposal language and budget contributes to a robust, well thought-out proposal highlighting collaboration. Letters of support should outline specific elements of the research proposal from both site administrators and clinicians and demonstrate a high level of engagement. Realistic budget planning should include both researchers and site administrators and consider: 1) current staff or potential for hiring staff if needed to support the project; 2) costs of starting the project (e.g., training, operations support); and 3) ongoing support.

Writing the formal research proposal is an iterative process so planning for extra time is important. Proposal writing and funding decisions usually follow cycles and timelines set by the funding agencies. Proposal submission deadlines may conflict with clinical site priorities (e.g., launch of a new electronic health record at the same time a grant is due). Frequently, there are significant time lags from submission to grant review and from review decisions to receiving funding. There may be further delay or required shift in focus if the proposal is not funded on the first submission, which is quite common. Clinicians and novice researchers sometimes are not aware of, or account for these time lags in their research plan which can lead to frustration and/or derailment of their research plan. Developing back up plans for ways to conduct the research without funding may be necessary.

Phase 4. Research Process – Study Management and Ongoing Implementation

Once the proposal is funded or a start date for the study is determined, institutional review board (IRB) approval needs to be obtained. The IRB ensures the ethical conduct of research particularly about risks and benefits, autonomy, and justice for the study participants. In collaborative research, it is important to understand what each collaborating institution requires in terms of IRB approval including ceding reciprocity, single IRB utilization, and Federal Wide Assurances for those institutions that do not have their own IRB. In addition, clinical trials and interventional studies will require additional preparations such as a data safety monitoring plan (DSMP) and/or board (DSMB).

Once IRB and study site approval is obtained, the study can be implemented. Balancing the reality of the constraints and limitations of clinical settings with research fidelity and rigor proposed in the research plan becomes a critical issue for success of the study. Researchers may lead fidelity checks to ensure that intervention delivery and data collection are occurring as prescribed and in the same way for every study participant. Although research procedures should be planned carefully with input from both researchers and clinicians prior to study start, procedures may need to be modified with IRB approval. In addition to research progress, results of preliminary analyses should be shared at predetermined time points throughout the study (e.g., 25%, 50%, 75% data collected) to monitor safety, begin to place results in context, plan manuscripts and future directions, and arrange for dissemination of results to the study setting(s).

Regular study team meetings should be held to meet the goals and objectives of the study and address any potential issues that may be hindering study success or undermining scientific rigor. Larger project team meetings may also be held in order to provide status updates on a monthly or quarterly basis depending on the stage of the project to keep stakeholders, who are not intimately involved with day-to-day study team operations, engaged in the research process. Circulating minutes and study updates in between meetings also helps to keep the team connected.

Phase 5. Publication – Dissemination Across Both Research and Clinical Sites

The goal of research is to generate evidence to advance hospice and palliative care practice and science, thus broad dissemination of study results is essential. In the collaborative partnership, each entity might have important audiences to be considered. For researchers, presentations at research conferences and publications in peer reviewed journals in their field would be important. Clinicians may be more interested in community presentations—within their organization, other partnership organizations, or targeting to local patient or interest groups in their community – to promote quality improvement, practice change, or community education.

Open discussion to recognize each member’s contribution and give proper credit for their work can motivate and keep all collaborators engaged in the research process. It is important to start these discussions before dissemination efforts begin and agree on explicit guidelines for authorship. Recommendations for defining the roles of authors and contributors are in Box C and can be found on the International Committee of Medical Journal Editors (http://www.icmje.org/) website. Collaborators who do not contribute directly to the research and writing process may receive acknowledgement of their important contribution to the research team within the manuscript. In hospice and palliative care specifically, local and national conferences, as well as discipline specific journals, are important to consider. Increasingly, social media and mainstream media are ways to share study results with a wider audience including community members, patients and family caregivers. Strategies for crafting messages appropriate for target audiences may come in many forms including formal academic mentorship and marketing colleagues. Care must be taken to involve the collaborative team in drafting and finalizing dissemination efforts to ensure all agencies have access to review final reports before publication.

Box C. International Committee of Medical Journal Editors authorship recommendations.

Substantial contributions to the conception or design of the work; or the acquisition, analysis, or interpretation of data for the work; AND Drafting the work or revising it critically for important intellectual content; AND Final approval of the version to be published; AND Agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

CASE EXEMPLARS: RESEARCH GUIDE IN ACTION

Above descriptions of researcher-clinician- site administrator collaborations throughout the research life cycle will hopefully lead to more meaningful outcomes in hospice and palliative care research. Listed below are two particular case exemplars based on the authors’ experiences in both acute and community hospice and palliative care settings to illustrate the challenges and successes of collaborative research.

Case 1 – Research initiated by clinicians

1. Identifying clinical problem and research question – Dr. W is a PhD prepared researcher based at an academic institution who conducts research in hospice care. A community hospice organization reached out to Dr. W to explore combining her expertise in heart failure research with their need to improve care for their patients with end stage heart failure. Dr. W and the hospice leadership meet to gauge interest, brainstorm ideas, and assess feasibility from both sides. They agreed on conducting an unfunded qualitative study to evaluate the needs of heart failure patients from key stakeholder groups and use that data to apply for funding to develop and pilot an intervention.

2. Identify stakeholders and build relationships – Dr. W was excited about the enthusiastic response she received from the hospice leadership but recognized that the community hospice organization did not have much research experience. Therefore, Dr. W would need to develop the study methodology, be responsible for submitting the study to the IRB, and guide leadership and staff on the research process. After developing the initial study design, Dr. W met with leadership and clinical staff to discuss and obtain feedback to refine the study protocol. She subsequently submitted and received approval from her institution’s IRB to start conducting unfunded, pilot qualitative interviews.

3. Proposal Writing – After Dr. W finished collecting preliminary qualitative data, there was a transition in hospice leadership with a new Chief Medical Officer installed. Dr. W’s connections to other members of the hospice leadership and clinical staff helped the new Chief Medical Officer offer support to the ongoing project. After months of collaborative monthly meetings and analyzing qualitative data together, Dr. W wrote the full grant proposal seeking feedback from hospice and community stakeholder groups. The grant proposal received positive feedback and was funded.

4. Research Process – To maintain fidelity of the intervention, Dr. W standardized the training for staff who were providing the intervention. While this was time consuming, staff were receptive and understood the need to maintain strict protocols as part of the study. In addition, she hired a research assistant at the hospice that streamlined and standardized data collection.

5. Publication – After study completion, hospice leadership and clinical staff received a presentation on the results and discussed dissemination of the study findings. Dr. W worked closely with key hospice team members and assisted them to present the findings to the various community stakeholders. In addition, they wrote and submitted a manuscript together to a peer reviewed journal with Dr. W as the first author and other team members as co-authors.

Case 2 – Research initiated by academic researcher

1. Identifying clinical problem and research question – Dr. B is a PhD prepared nurse scientist who conducts research at a large academic medical center and has a strong interest in palliative and end of life care for neonates. To formulate her research question, Dr. B finds gaps in the literature and seeks input from Neonatal Intensive Care Unit clinicians and unit leadership about what they would find most important for advancements in care for patients, families, interdisciplinary clinicians.

2. Identify stakeholders and build relationships –Dr. B considers who the key stakeholders are with both research and clinical expertise within the institution. She contacts the Chief of Neonatology, the unit Nurse Manager, the Director of the Palliative Care Service, Chair of the Bereavement Committee, and unit staff to garner their ideas and support. During this process, she also learns that there is a unit Research Committee where she will need to submit required documentation for approval prior to submitting an IRB application. She also hears concerns from staff that researchers often do not provide enough information about the project at the study start and rarely return to the unit to present findings. Plans are made for Dr. B. to regularly attend medical and nursing meetings to address these issues.

3. Proposal Writing – During the grant writing process, study documents are shared and clinical members are invited to provide feedback regarding specific aims, methods, study protocol and desired outcomes. Expected products from the study and authorship opportunities are also introduced. Dr. B identifies a funding source and submits her IRB application. Key personnel to be included on the funding application are identified with clinical staff having a clear role.

4. Research Process –Throughout the study, Dr. B. holds monthly brown bag lunch sessions to update staff on any issues with the study, to identify concerns from staff, and to present any preliminary data that can be shared (participants enrolled, preliminary analysis, recruitment struggles and brainstorming for new approaches). Initial recruitment was slowed by a system-wide educational protocol that took additional staff time and attention away from this project. The regular team meetings were instrumental in addressing this as the issue was caught early, addressed with input from clinicians and researchers and changes implemented.

5. Publication– Once the study is completed, Dr. B. meets with key personnel to present study results and determine the manuscripts that can be written from the data. Timelines and expectations for authorship are discussed and implemented with successful publications.

CONCLUSION

Above all, a collaborative research process requires communication and engagement by all involved parties. Although it may mean an increase in time and burden for researchers, clinicians, and site administrators, it can lead to more real-world successful studies and the generation of clinically meaningful outcomes. The collaborative research process described in this paper is based on our collective experiences and does not address all potential challenges and hurdles. The examples above illustrate the steps for researchers to utilize the proposed framework. Implications from the authors’ experience using the model include: 1) reaching out to individuals interest to discuss collaborative projects, 2) being intentional in including key stakeholders as equal collaborators from the inception of research ideas and throughout the process; 3) planning to build in time and structure to develop mutually respectful and trusting relationships; 4) developing ongoing communication and negotiation strategies as inevitable challenges will arise in the real-world clinical research settings.

A strong collaboration between academic researchers, clinicians, and site administrators is necessary to achieve high quality hospice and palliative care research that is clinically meaningful and scientifically rigorous. Efforts to build a successful research collaboration must start from a place of mutual trust and respect, commitment to the research goals, active engagement of all team members, and maintenance of transparency through open and clear communication. The collaborative process for hospice and palliative care researchers, clinicians, and site administrators can be a successful interwoven and iterative process that contributes to the highest-quality care for seriously ill patients and their family caregivers.