A Consultation Service to Support Participants in Psychiatric Research

Participants in psychiatric research are drawn from a potentially vulnerable population. They may enroll in research out of the need for low-cost or subsidized treatment. As with other vulnerable populations, research involving individuals with mental illness should focus on their needs in addition to those of the investigators. At New York State Psychiatric Institute (NYSPI) participants may be involved in research that does not focus on social issues, as in many medication trials, nor provide clinical interventions, as in many neuroscience studies. Participants very often enter studies with a variety of unmet social concerns that may substantially affect their quality of life and interfere with their ability to remain involved with the research program. Concrete social needs often fall outside of the scope of a typical research protocol, meaning that they may otherwise go unaddressed for individuals who have limited access to additional services.

The Social Work Consultation Service (SWCS) at NYSPI was developed in 2006 to meet the needs of research participants that extend beyond what is provided by any particular research study or clinical trial. Participants seeking services from the SWCS have expressed needs that tend to be concrete and specific, ranging from assistance with job placement, to fighting an upcoming eviction, to referrals for basic psychiatric or medical services. Participants are limited to three sessions in which they are provided with advice, resources, or referrals to outside agencies.

A recent chart review of the initial 131 participants, drawn from the first five years of the program (2006–2011), found that the SWCS has successfully addressed diverse needs from a wide variety of research units. High rates of referrals were from neuropsychiatric units (42%), although outpatient mental health (28%) and substance abuse research clinics (15%) were also major referral sources. Many participants sought assistance from SWCS for multiple needs. The most common were assistance with entitlements (39%), such as Supplemental Security Income, Medicaid, food stamps, and so on, followed by employment assistance (36%) and mental health service referrals (28%). Housing issues (25%) and referrals for co-occurring medical conditions (21%) were also in demand. Single individuals (90%) and those lacking private insurance (84%) were especially likely to seek assistance through the service.

Of those who followed up on the initial referral and attended at least one appointment, 84% had their presenting problem successfully addressed within the three-session limit. A successful referral required, on average, just under two in-person meetings, adding up to an estimated four hours of service time, including associated paperwork and outside contacts—a modest time commitment when considering that each social worker was working with at most a single SWCS referral at any given time. At a large institution such as NYSPI, this service can be easily absorbed into the existing social work department with minimal effect on existing programming.

Psychiatric research is often conducted at hospitals, universities, and other agencies that have existing social service departments to facilitate the implementation of a consultation service. These departments can assign service coordination to one social worker who has the responsibility of delegating cases to the rest of the staff. Implementing the service is then a matter of publicizing its existence to the in-house research units and receiving referrals. Agencies that train social work interns can involve them in the service, further spreading the workload while providing valuable training. Smaller research projects that are unable to collaborate with an existing social work department may have more difficulty meeting the additional needs of study participants. Alternative means of providing these services may need to be explored, such as training research assistants to conduct basic needs assessments.

SWCS likely benefits patients as well as research teams. The referred patients receive assistance in facing substantial social stressors, such as evictions, layoffs, relationship problems, and medical complications. Alleviating these stressors may improve participant retention in the research studies. Researchers should consider the possibility that their own work may reap secondary benefits from direct services provided to their vulnerable research population.

A potential risk in implementing a consultation service is a systematic bias on the results of referring studies, particularly intervention studies. SWCS was offered to all research participants at NYSPI; however, internal validity may be compromised if researchers preferentially refer participants from their experimental or control group. Furthermore, if consultation services are accessed by a large proportion of participants from one study, the impact of such services must be considered when generalizing the outcomes of that study.

The volume of referrals received over the five-year period suggests that there is a substantial need for additional services among psychiatric research participants and provides preliminary support to provide adjunctive social services. A social work consultation service may help fulfill the responsibility of researchers to address the needs of this vulnerable population and may improve retention in research studies by alleviating barriers to participation.