Before a hospice agency agrees to participate in a research study (or before a hospice agency writes a grant proposal for conducting research), the proposed research should be evaluated thoroughly.  This can be somewhat intimidating if hospice staff members are unaccustomed to evaluating research, especially if the researcher holds advanced degrees and presents themselves as an “expert” in the field. However, all hospice agencies have the ability to evaluate research on the following criteria, and should do so for each research project they consider undertaking. The following are questions hospice agencies can ask themselves in evaluating research proposals. Utilizing this information, agencies can then determine whether undertaking a particular research project is in the best interest of the agency, staff, and patients and families.

Assessing Feasibility/Practicality

• Does this project seem “do-able”?
• Does the researcher have a realistic understanding of the realities of conducting research in the hospice setting?
• Is the proposed timeline reasonable and does it allow for flexibility?
• Does the researcher have funds to support the proposed research activities at the hospice, or will the hospice agency provide time, services, space, etc. “in-kind”?

Assessing Impact on Patients and Families

• Is the proposed research respectful of the unique nature of the end-of-life journey in its methodology and implementation? (For example, does the research recognize that asking an imminently dying person to complete a one-hour survey/assessment may be an undue burden on someone who may prefer to spend their time with family and friends?)
• How might the proposed research impact how patients and families view hospice?
• How might the proposed research change the hospice experience of participating patients, families, and community members?

Assessing Protection of Human Subjects

• Has the researcher included protections for participants’ confidentiality and privacy?
• Does the research proposal contain detailed information about how informed consent will be sought, and by whom?
• Does the researcher intend to seek IRB approval of the research? If so, when and where?
• Is the research study designed in a way that makes it clear to participants that participation is voluntary and declining to participate would in no way effect services? (For example, are the patient care teams being asked to seek informed consent? If so, care must be taken to ensure that hospice patients and families do not consent to the study merely out of a sense of “obligation” in return for good care).
• Does the research proposal include samples of the informed consent form?

Assessing Public Policy Implications

• How will patients and families ultimately benefit from this research?
• How will hospice agencies ultimately benefit from this research?
• What is the stated goal/purpose of the research?
• If this goal/purpose is achieved and becomes a headline in The New York Times, what impact will the study have on hospice agencies nationwide?
• If this goal/purpose is NOT achieved and this becomes a headline in The New York Times, what effect will the study have on hospices nationwide?
• What could potentially go “wrong” with this research?
• What could potentially go “right” with this research?
• How would either of these possibilities impact hospice care?
• How might the proposed research impact hospice reimbursement models?
• What would critics of hospice do with the results of this study?
• What would supporters of hospice do with the results of this study?
• What could hospice agencies do with the results?

Assessing Impact on Agency Staff and Volunteers

• How much time will clinical staff need to spend on the proposed research?
• Will time at the bedside/”direct patient care” be negatively or positively affected by the proposed research?
• How much time will administrative and support staff need to spend on the proposed research?
• How will volunteers be impacted by the proposed research?
• How might volunteers interested in research be used to assist in the research study (for example, data entry)?
• How might participation in the proposed research improve patient care?

Assessing Potential Costs of Research

• How will the hospice agency be compensated for the time it spends coordinating and participating in research activities?
• How will the hospice agency be compensated for the time that clinical staff is spending on the research rather than on direct patient care?
• What program/agency resources will need to be provided in order to participate in the proposed research project? (For example, where will research staff sit while at the hospice? Do they need their own space, desk, computer, phone line, etc.?)
• If the hospice agency had to “replace” the staff involved in research, how much would this cost?
• What value does the agency place on the proposed research? The agency may be more willing to commit agency resources (in-kind or otherwise) to the project if the research seeks to answer a question the hospice agency deems to be a high priority.
• Does the formal contract reflect in detail the entire scope of responsibilities the hospice is committing to and the compensation the hospice agency will receive for its participation in the proposed research?
• What benefits does the proposed research provide to the agency?

Almost all scholarly research carries practical and political implications. Better that we should spell these out ourselves than leave that task to people with a vested interest in stressing only some of the implications and falsifying others. The idea that academics should remain “above the fray” only gives ideologues license to misuse our work.  -- Stephanie Coontz, U.S. social historian.