Trudy Persky, M.A., L.S.W., A.C.S.W., retired from her job as a psychiatric social worker
specializing in geriatric issues in 1997. But that wasn’t the end of her interest
in older adults and mental health.
Ms. Persky soon found herself chairing a consumer advisory committee for the Primary Care Research
in Substance Abuse and Mental Health for the Elderly (PRISM-E) study, funded in part by SAMHSA.
With the hope of transforming consumers into partners, the researchers created a multi-site consumer
committee as well as consumer advisory committees at each of the study’s local sites. That
partnership brought benefits to both researchers and consumers, said Ms. Persky.
Ms. Persky’s first act was to recruit consumers to serve on Philadelphia’s committee.
She called social workers, nurses, and others she had known on the job and asked them to recommend
patients receiving mental health or substance abuse services.
The committee consisted of about a dozen older adults, two caregivers, and an employee of a mental
health agency.
When the researchers were constructing the questionnaire to screen study participants, the committee
shared the consumer’s point of view. “The questionnaire was too long for them,” remembered
Ms. Persky. “And they became markedly upset when they came to the part about suicide.” With
that feedback in mind, the researchers shortened the questionnaire and reworded the section on suicide.
Consumers also helped shape the interventions studied. For example, the consumers alerted the researchers
to just how important transportation assistance would be for the enhanced referral model. “We
had thought about it, but didn’t consider it that important,” confessed researcher Cynthia
M. Zubritsky, Ph.D., of the Philadelphia site. “They also told us to interpret what supporte
dtransportation
meant more broadly—not just money for taxis but for taking the subway or reimbursing
caregivers for gas for their cars.”
Throughout the study, the researchers kept the advisory committees informed. Even now that PRISM-E
has ended, the experience is still influencing
both consumers and researchers. “Once you let stakeholders in, it’s hard to miss the
fact that they provide a viewpoint that’s irreplaceable,” said researcher Dean D. Krahn,
M.D., of the Wisconsin site.
Ms. Persky has launched a new career as an advocate, giving presentations at senior centers and
other venues. Her message? “I tell older consumers that they have choices,” she said. “For
my generation, that’s been a hard nut to crack.”
