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Table 1 Summary of program stakeholders and their respective roles

From: Building a rapid autopsy program – a step-by-step logistics guide

Stakeholder

Interest/Responsibility

Medical oncology

Responsible for identifying patients and serving as a bridge of trust as patients are introduced to RAP staff. Many patients prefer to be approached by their primary oncologist first. Continues to provide standard of care regardless of enrollment into the RAP, serves as the patient’s primary medical advocate, and acts in best interest of the patient. Honest and realistic communication with patient and family regarding prognosis and life expectancy is critical.

Radiology

Reviews patients’ imaging histories throughout course of disease. Provides summary highlights of disease history in the context of remission, progression, and relapse - by organ. Gives recommendations regarding areas of interest.

Supportive care

Aid in the identification of candidate patients. Are available to meet with patients struggling to cope with end of life issues.

Meeting with research staff involved in collections to ensure coping appropriately.

Patient and family advocates

Serve as stakeholders in project planning meetings. Provides input on recruitment strategies and educational handouts.

Case management

Aid in identifying candidate patients. Ensure enrolled patients are placed in hospice programs compatible with the RAP. Facilitate introduction and initial communication between RAP and chosen Hospice company.

Social work

Aid in identifying candidate patients. Serve as a bridge of trust as patients are introduced to RAP staff. Help patient and family process key information related to the program requirements and obligations.

Community education

Facilitate discussions with Patient Advocates. Guide development of study handouts and recruitment materials.

Pathology

Responsible for histological assessment of collected specimens.

Basic research

Provide scientific proposals for new projects. Perform experiments. Assist in sample collection if needed.

Hospitalists

Aid in identifying candidate patients. Serve as a bridge of trust as patients are introduced to RAP staff. Provide Legacy team with updated and real time information regarding patient’s health status.

Hospice

Responsible for notifying RAP team IMMEDIATELY after death and preparing body for transportation. Provide support to both patients and families dealing with end-of-life issues. Provide RAP team with updated and real time information regarding patient’s health status. Strongly encouraged to provide continuous care towards last 48 h of life expectancy. Declares death, provides details of death to funeral home, and signs final death certificate.

Transportation

Responsible for transporting body immediately after death, within 1 hour’s notice. Expected to be professional and compassionate when dealing with a decedent’s family.

Funeral homes

Retrieve body from Hospital. Coordinates with RAP staff and Nursing Administration to schedule pick up.

Participants, friends, & family

Must be fully supportive and in agreement of patient’s wishes to donate. Responsible for informing RAP or Hospice staff of sudden change in health status. Have final authority to decline donation.

Nursing administration

Assists in discharge paperwork and release of body.

Research operations

Administrative and operational interests.