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Logo of nihpaAbout Author manuscriptsSubmit a manuscriptNIH Public Access; Author Manuscript; Accepted for publication in peer reviewed journal;
 
Prog Community Health Partnersh. Author manuscript; available in PMC May 17, 2012.
Published in final edited form as:
PMCID: PMC3355190
NIHMSID: NIHMS374296
Developing Research and Recruitment While Fostering Stakeholder Engagement in a National Institutes of Mental Health–Funded Interventions and Practice Research Infrastructure Programs Grant for Depression
Shannon Wiltsey Stirman, PhD,1,2 Lizabeth A. Goldstein,3,4 Glenda Wrenn, MD,3 Marna Barrett, PhD,3 Mary Beth Connolly Gibbons, PhD,3 Delane Casiano, MD,3 Donald Thompson, PhD,5 Patricia P. Green,5 Laura Heintz,5 Jacques P. Barber, PhD,3,6 and Paul Crits-Christoph, PhD3
1National Center for Posttraumatic Stress Disorder, Women’s Health Sciences Division and VA Boston Healthcare System
2Boston University
3University of Pennsylvania
4Ohio State University
5Northwestern Human Services of Philadelphia
6Philadelphia VA Medical Center
Background
In the context of a National Institutes of Mental Health-funded Interventions and Practice Research Infrastructure Programs (IP-RISP) grant for the treatment of depression, a partnership was developed between a community mental health organization and a team of researchers.
Objectives
This paper describes the collaborative process, key challenges, and strategies employed to meet the goals of the first phase of the grant, which included development of a working and sustainable partnership and building capacity for recruitment and research.
Methods
This paper was developed through the use of qualitative interviews and discussion with a variety of IP-RISP partners.
Lessons Learned
Communication with multiple stakeholders through varied channels, feedback from stakeholders on research procedures, and employing a research liaison at the clinic have been key strategies in the first phase of the grant.
Conclusion
The strategies we employed allowed multiple stakeholders to contribute to the larger mission of the IP-RISP and helped to establish an ongoing research program within the mental health organization.
Keywords: Mental health, psychiatry and psychology, depression, research infrastructure, community health partnerships
The effectiveness and implementation of evidence based psychosocial treatments in typical community-based outpatient behavioral health settings has been a major area of interest among policy makers, researchers, clinicians, consumers, and funding agencies.1 In forging collaborations to conduct research on these topics, however, community and academic partners have experienced a variety of challenges. These challenges include differing clinical and research priorities, timelines, cultures, competing demands, power imbalances, and personnel changes.14 Thus, strategies for developing collaboration are crucial in building successful research partnerships.1,5 To facilitate working partnerships between community mental health agencies and academic researchers, the National Institute of Mental Health developed the IP-RISP program. IP-RISP grants are awarded to develop infrastructure and promote sustainable partnerships to facilitate research on evidence based services in community behavioral health care settings.
Focused on the treatment of depression, the first 2 years of our IP-RISP grant were devoted to (1) developing a working and sustainable research partnership and (2) building capacity for, and reducing barriers to, recruitment and research participation. In this paper, we have delineated the challenges faced and the strategies implemented to meet each of these goals. We identified central strategies and challenges through interviews, review of grant materials and minutes from development meetings, and informal discussions with clinicians, administrators, staff, and research personnel collaborating on the IP-RISP.
Our partnership began with a series of conversations and pilot studies conducted several years before receipt of IP-RISP funding. In 2002, Northwestern Human Services (NHS) approached intervention and services researchers at the University of Pennsylvania (Penn) Center for Psychotherapy Research about developing a collaboration focused on the implementation of evidence based interventions and outcome assessment practices within one of its subsidiaries—Northwestern Human Services of Philadelphia (NHSP). A nonprofit, publicly funded community behavioral health care organization, NHSP provides a variety of programs (e.g., adult and child outpatient psychotherapy, day treatment programs, drug and alcohol programs) to more than 5,700 consumers at 3 locations throughout the city. The consumer population is diverse, with 69% ethnic minorities, 63% single, and 30% having fewer than 12 years of education. The majority of consumers receive some form of public assistance as well as Medicaid for medical and behavioral health services. Nearly 60% of of NHSP adult consumers have received a diagnosis of a mood disorder, and 21% have received a diagnosis of major depressive disorder. The researchers from Penn have extensive experience conducting studies on treatments for major depressive disorder and substance abuse as well as on psychotherapy process and training. In 2006, after 4 years of planning and collaboration on preliminary projects and feasibility research, Penn and NHSP applied for and received a 5-year IP-RISP grant to build collaborative capacity to conduct research on treatments for depression.
The NHSP and Penn have been equal partners in the development of the research agenda, budget, and proposals for funding. Core members of the IP-RISP partnership include NHS’s regional director of practice development, directors of outpatient services, intake directors, an NHSP director, a clinician, 4 Penn researchers, and 2 support staff. Additional individuals from a variety of positions and perspectives have participated in our planning meetings, on the advisory board, and on subcommittees. Decisions regarding research topics, study design, and implementation are made through consensus. For example, in identifying major depressive disorder as the central focus of the grant, we considered common consumer diagnoses, NHSP’s interest in new assessment and treatment procedures, and researchers’ backgrounds.
Because a partnership of this nature requires a bidirectional flow of information and ideas, we sought opportunities for direct contact between the core IP-RISP partners and a broad group of NHSP personnel and consumers. Although an NHSP clinician has served on the executive committee since the partnership began, additional clinician involvement and input has been essential given the large number of clinicians at NHSP. Because of the size of NHSP, busy clinical schedules, and clinician turnover, a variety of measures have been necessary to keep clinicians informed about ongoing projects, solicit their input, and facilitate referrals for ongoing research.5 Discussion and formal presentations about research projects and findings have been included in monthly clinical meetings. We also formed ad hoc committees to address specific aspects of upcoming studies, and had informal conversations (e.g., time in between appointments) about IP-RISP initiatives. When recruiting therapists for pilot psychotherapy studies, we place informational flyers in clinicians’ mailboxes, and the outpatient director follows up with discussion of the project at staff meetings. A research assistant (RA) orients new clinicians and staff to the IP-RISP to make them aware of research projects and procedures. Her availability allows clinicians and staff to provide input, share ideas, or ask questions at their convenience. To date, clinicians have contributed to and played a role in IP-RISP activities as standing members of the advisory board, through one-time participation in ad hoc advisory meetings, by making suggestions, responding to surveys, referring clients, serving as study therapists, and collaborating on research projects.
Recruitment of consumer members to the advisory board has been challenging. Calls for consumer participation have been made through the quarterly newsletter that is distributed throughout the agency, signs in the waiting rooms, and clinician outreach to their consumers. Despite offers to compensate consumers for their time and transportation, volunteers have not been forthcoming. Some potentially interested consumers were not able to commit to longer term involvement because of practical considerations such as childcare, work, or family obligations. Many depressed consumers who seek treatment for depression do not continue in longer term treatment,6 and others struggle with symptoms such as lack of motivation or levels of impairment that limit their ability to make a commitment to the IP-RISP. The IR-RISP studies have focused on consumers who typically attend therapy once a week, and the level of engagement and investment in the agency may be lower among this consumer population than among consumers who participate in more intensive outpatient programs. Some consumers who were identified as potential advisory committee members were clients of clinicians who served on the IP-RISP committees. Thus, their participation would have introduced additional challenges related to dual relationships. In sum, these obstacles made it difficult to receive input from a standing committee of representative consumers.
As we sought consumer collaborators, other more familiar and accessible approaches to solicit consumer input were needed. We have tried to find ways to solicit suggestions and feedback in ways that require less of a commitment on the part of the consumer and that have been outside the scope of formal research projects. For instance, consumers have been willing and able to meet with us for one-time discussions, even if they could not commit to longer term involvement. During the design phase of some studies associated with the IP-RISP, we discussed ideas and procedures with consumers to assess interest, satisfaction with the proposed study, or the “user friendliness” of the procedures. We have also sought their opinions and feedback within the context of research projects. Over time, as a result of this contact with consumers, we have noticed increased communication between IP-RISP personnel and consumers. Now that the IP-RISP activities and personnel are more familiar, consumers have started to recognize us, share ideas, and express interest in research activities.
The strategies employed to date have afforded increased communication and built trusting relationships between a large number of clinicians, consumers and other members of the IP-RISP partnership. We continue to grapple with the best way to promote consumer involvement within the partnership. We have been encouraged by an increase in informal contact between research personnel and consumers. Less formal contact may be more comfortable and feasible for many consumers, and IP-RISP personnel have become increasingly accessible for such conversations. However, we also believe that ongoing collaboration with consumers requires more of a stable and consistent consumer presence in the partnership. It is our hope that, as consumers have the opportunity to become familiar and comfortable with the IP-RISP initiatives and core personnel, recruitment of consumer advisors through direct contact and outreach will be more fruitful.
For community-based research to be successful, it is essential that research procedures be integrated into the daily clinic routine and that efforts to conduct research be a team effort.1,6 Thus, it is important that all stakeholders, from agency personnel to consumers to researchers, perceive some of its benefits in the short term.1,4 With this in mind, we prioritized projects based on the potential for making a visible impact on service delivery and satisfaction. For example, we installed new, networked computers in therapists’ offices and streamlined documentation and data collection procedures for research. We solicited input from multiple clinicians and clients on a clinic-wide assessment procedure using handheld personal digital assistants, and conducted a one-time feasibility study on the use of personal digital assistants with 200 consumers.7 These changes allowed us to develop an infrastructure for research that was user friendly and clinically useful.
One of our earliest successes in the development of our research capacity illustrates the importance of listening to and learning from each other. In discussing several ideas for research on depression, NHSP personnel raised concerns about their feasibility given the extremely high rates of disengagement from services after a single intake session as well as high dropout from treatment. We were all concerned about factors that led to disengagement and the implications of attrition on treatment effectiveness, staff morale, and the interpretability of research findings. We examined agency data to document the extent of the problem, talked with consumers, and conducted an extensive literature review.8 When we sought feedback from consumers at one site, we learned that the physical environment of the waiting area was a reason that consumers did not return for treatment after an intake. Based on what we learned, our first joint research project focused on renovating and refurbishing the waiting area and treatment offices and to study the impact of these improvements. Our hope was that consumers would feel more comfortable and be more likely to return for appointments. The renovations indeed resulted in greater satisfaction from agency staff and consumers,9 and attendance at the first treatment session after intake increased. This project is an example of how working together to develop projects resulted in benefits for multiple stakeholders: Consumer satisfaction, attendance, and staff morale improved, and our capacity to recruit and retain participants in future research may also have increased.
Another issue related to high rates of attrition is the fee-for-service payment model, which many of the city’s agencies, including NHSP, use to pay their therapists to minimize financial losses that occur when patients “no show” for scheduled appointments. This model can impact the clinicians’ ability to participate in research-related activities. If research screening and recruitment add significantly to the time spent with each client, clinicians can see fewer clients each day. Using an iterative process involving feedback from staff and clinicians who perceived initial strategies as too time consuming, we developed a feasible and accepted strategy. Consumers are now given a very brief screening form to complete when they check in. The completed form is given to the intake clinician at the start of the evaluation, where it is reviewed and scored to determine study eligibility. The clinician introduces eligible clients to an RA at the end of the intake so that the client can learn about opportunities to participate in research and ask questions. The amount of time these steps require of clinicians is typically 5 minutes or less. Periodic reminders and trainings in screening procedures have been important to the success of this effort. The steps we have taken to refine our screening and recruitment procedures have decreased the number of incorrectly scored screening forms by 35%, and increased our ability to identify potential research participants.
Throughout each of these efforts, a liaison between Penn and NHSP was central to providing continuity and facilitating day-to-day progress. Coordinating multiple projects within the agency to minimize staff burden and avoid recruiting from the same pool of potential research participants requires a daily stream of communication between Penn and the NHSP. The NHSP has used funds from year 2 of the grant to hire a full-time, on-site staff RA whose primary responsibility is coordination of IP-RISP research activities at the clinic. She assists with day-to-day agency operations, makes reminder calls to consumers and research participants, and solicits feed back and ideas about current and future projects. She also conducts research procedures, facilitates data collection, and gathers information for communications with institutional review boards* and funding agencies. The RA orients new consumers and personnel to the IP-RISP and trains new clinical and support personnel for research protocols. The creation of this formal position to bridge research and clinical activities and personnel has led to better collaboration, more complete integration of research into daily agency activities, enhanced feedback and participation, and increased recruitment.
During the early phase of the IP-RISP grant, it has been essential to nurture the partnership while meeting our goals (as well as the funding agency’s expectations) of research productivity. We continually seek additional opportunities to increase communication between stakeholders, conduct research that immediately benefits the agency and consumers, and turn challenges into opportunities for growth. Studying the impact of these efforts has allowed us to course correct more quickly and make collaborative decisions about next steps in our program. It has taken the input of multiple stakeholders to build our partnership’s capacity for success, and it remains a work in progress. We have developed a new set of goals and projects for the next phase, but in light of the challenges discussed, we continue our efforts to facilitate ongoing consumer engagement within the partnership. The community-based participatory research strategies that we have described significantly enhanced engagement among clinician and consumer stakeholders at the agency, resulting in positive progress toward the realization of our goals for the first phase of the IP-RISP.
Footnotes
*We received Institutional Review Board (IRB) approval for the overall IP-RISP grant from the Penn, City, and NHSP IRBs. Each specific research project is also approved by the IRBS.
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