Researchers are a good resource for hospice agencies in that they often have the skills needed to explore questions of interest to hospice agencies through rigorous research. Students can be also a tremendous resource for hospice agencies to support research projects. Students often bring fresh ideas, innovative research methodologies, and tremendous enthusiasm to research projects. Many student research projects are unfunded -- students look to hospice agencies to provide access to their staff, patients and families without compensation. However, students (as well as established researchers) may lack experience conducting research in hospice settings and thus will need mentoring and guidance in designing a research project that will be feasible and beneficial in the hospice setting.

Project Design
Ideally, hospice agencies will have input into the design of the research project early in the planning process. Often, “fully-formed” research projects are proposed to the hospice agency with few opportunities for input from hospice staff. As hospice agencies participate in research and begin to see the value of early input into research projects, many hospice agencies begin to require that researchers and students involve them at the earliest stage of the planning process. While researchers and students have valuable academic training in their particular disciplines, they may lack the “real-life” experience of hospice professionals who provide direct care for persons at the end of life.  Early collaboration between researchers/students and hospice agencies results in a better quality research project that takes into account the realities of hospice care in the design of their research methodology. Some of the lessons hospice researchers have learned (through experience) include:

• Collecting extensive data during the admission visit is often inappropriate and/or impractical because of the emotional nature of the amount of information patients and families are asked to absorb. (The exception to this would be chart review of data already routinely collected during the admission visit).
• Patients and families may lack the energy or desire to complete lengthy surveys or questionnaires. Data collection works best with hospice patients and families when there is minimal intrusion into their lives. Time is precious to hospice patients and families, therefore respectfully minimizing burden on research subjects in the hospice setting is critical. Clinical staff members are tremendously busy. Minimize data collection responsibilities for clinical staff members and avoid burdening them with the task of data collection altogether if possible.

Tracking Systems
In working with students and researchers, systems are incredibly important to keep track of the research process and make sure the public policy implications of the research are assessed and monitored by the hospice agency.   Some hospice agencies require “right of review” for all research conducted at the hospice before anything is published.  It is good practice to request that the hospice review the final document even if the hospice agency does not require this. This can be a delicate issue with researchers accustomed to the concept of “academic freedom.” Additionally, hospice agencies should not ask that research results be altered before publication. However, hospice agencies, as partners in research, have the right to ensure that research in which they have collaborated contains a fair and accurate interpretation of the results and incorporates salient information about hospice care to illustrate the importance of various results.  Hospice agencies are under no obligation to participate in research. Hospice agencies need to have full knowledge that every research study has the potential to impact hospice care, both positively and negatively.

Two ways in which hospice agencies can monitor the research process are by the use of contracts/agreements between hospice agencies and researchers, as well as timesheets for staff and students working on research projects.  Contracts should clearly delineate: (1) who will be listed as co-authors and co-presenters for publications and presentations, (2) who has the final right of review for publications and presentation, (3) what the responsibilities of the researcher/student and hospice agency are, (4) what compensation will be received for research services, and (5) how (and in what venues) results will be disseminated. Timesheets provide documentation of personnel costs of the research project.