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To describe the development of a sustainable community early psychosis program created through an academic–community partnership in the USA to other parties interested in implementing early psychosis services founded upon evidence based practices within community settings.
The service was developed around a sustainable core of key components, founded upon evidence based practice, with additional flexible elements that could be adapted to the needs of the individual commissioning county. This article describes the ways in which funding was sourced and secured as well as the partnerships developed through this process.
Successful development of the Prevention and Recovery from Early Psychosis (PREP) program in San Francisco County, California. PREP clinicians have received extensive training in the evidence-based approaches that are available through the program and treated 30 clients and their families in the first year of operation.
Development of a sustainable community program of this type in a non-universal health care setting which is historically seen as non-integrated required extensive partnering with agencies familiar with local resources. Implementation of the community-academic partnership bridged the gap between research and practice with successful integration of fidelity practice at the community level. The community partners were effective in sourcing funding and allocating resources while the academic side of the partnership provided training in evidence-based models and oversight of clinical implementation of the model. Stringent evaluation of the impact of the service is our next focus
Early intervention in psychosis is a major advance in psychosis treatment that offers specialised services for individuals with first-episode or recent-onset psychosis. The aim is to reduce the duration of untreated psychosis (DUP) which has been associated with better short- and long-term outcomes1, 2 by providing treatments during the “critical window” following the onset of the psychotic disorder3 to ameliorate the impact of symptoms, improve functioning and reduce relapse. There is growing evidence that Early Intervention services (EI Services) can reduce the burden of psychosis for the consumer, their families and society at large 4, 5.
EI services have predominantly been implemented in countries with universal health care systems (i.e. the Department of Health, in the UK, promoted the development of 50 EI services by 20046). However, even within countries where EI has received strong government backing, service implementation has not been without difficulty. For example, Tiffin and Glover7 reported that there was limited integration with child and adolescent services despite recommendations for this integration as laid out in the Policy Implementation Guideline (PIG) 8.
Implementing an integrated service in a predominantly non-integrated health system with both public and private health care components required innovative partnership development that led to a program breadth not possible in other health care settings. This article presents an account of the development of an EI service in San Francisco, California, one of the few EI services based on a community-academic partnership currently in existence in the United States. This partnership, the challenges faced and the approaches developed to overcome these obstacles will be described in this paper.
In 2005, the World Health Organization and the International Early Psychosis Association jointly published the Early Psychosis Declaration, 9 proposing five key themes integral to the development of EI services worldwide: 1) improving access; 2) engagement and treatment; 3) raising community awareness; 4) promoting recovery; 5) family engagement and support and practitioner training. Associated with these five areas were measurable outcomes by which EI Services could determine whether they were adhering to these themes. However, as Dodgson and McGowan10 state with regards to EI service development “service delivery… is about translating best-practice principles and the vision expressed in the Early Psychosis Declaration, into a clinical setting” (P45). This is the process through which all developing EI Services must proceed and one which PREP (Prevention and Recovery in Early Psychosis), proceeded through with the assistance of its partner agencies.
The PREP partnership originated from two intersecting interests in developing an early psychosis treatment program in San Francisco. First, a co-author (RB) and CEO of Family Service Agency of San Francisco (FSA) experienced a great amount of frustration while trying to access appropriate care for a family member who was exhibiting early signs of psychosis, despite his access to a number of available assessment and treatment services in the SF Bay Area. This led him to first research, and then contact, UCSF researchers working in innovative ways with this population. At the same time, early psychosis researchers in the Department of Psychiatry at UCSF were frustrated with the lack of clinical services to which they could refer research participants seeking treatment. Srihari et al.11 reported similar frustration in seeking services for research participants engaged in the PRIME study at Yale University, which they cite as impetus for the development of STEP, an early psychosis clinic. Initial attempts to develop direct services within the Department at UCSF were unsuccessful, as outpatient services at the time lacked the case management capacity necessary for this population. In addition, early psychosis services for adolescents and young adults did not fit neatly into either of the existing adult or child/adolescent service areas.
Through this connection, a community-academic partnership was formed with FSA providing extensive experience in developing comprehensive service systems for youth and adults and UCSF providing training in evidence-based practices for early psychosis, including formal diagnosis, medication management and Cognitive Behavioural Therapy for Psychosis (CBTp). The PREP partnership was born, its primary goal to rigorously and effectively provide treatment for those with recent onset psychosis or at ultra-high-risk of developing psychosis. PREP embodies the principles of Community Participatory Partnered Research as described by Jones and Wells, 12 emphasising equal partnership in the implementation of ‘research informed programs’ and can be thought of as being on a continuum between research originating in an academic setting and research that originated in the community. Green, Daniel and Novick13 argue that academic-community partnerships are essential in program development as “no one agency has the resources, access and trust relationships to address the wide range of community determinants of public health problems” (p21). They go on to state that productive partnerships commence with the identification of a problem (in the case of PREP, the lack of adequate services for individuals experiencing early psychosis), shared ownership of goals and missions and are built on the strengths of each partner. As described this partnership was forged from the outset, rather than later establishing partnerships and so benefitted from an established relationship and shared vision developed by the partners together. Importantly, it drew upon the strengths of the partners to utilise academic-level stringent implementation with measured fidelity and evaluation of the program, combined with the expertise of the community partners to implement services within the publicly-funded mental healthcare system.
Fortuitously, at the same time that the partners began developing PREP, a funding stream designated specifically for preventative mental health services became available from the State of California. The Mental Health Services Act (MHSA) was passed in 2005, stipulating that personal income over 1 million dollars annually be taxed at an extra one percent rate; these funds were then distributed at the County level to support mental health services with a prevention or early intervention focus. PREP partners educated the San Francisco County Department of Public Health and community members about EI for psychosis. Subsequently, a model was proposed as part of the SF County’s plan and a Request for Proposal was issued for an Early Psychosis Program. During this time, FSA recruited our third partner, Mental Health Association of San Francisco (MHA), an advocacy organisation who could provide community outreach and education. This collaboration helped to forge partnerships with Larkin Street Youth Services, an organisation focused on services for homeless youth, who now house a PREP Peer Outreach provider, and Sojourner Truth Foster Family Service Agency, who employ a PREP clinician to serve the foster care system (see Table 1 for a description of partner agencies).
PREP offers services for up to two years to individuals age 12 -35 with either a recent onset of psychosis (defined as an onset in the last five years) or at risk of developing psychosis. While early intervention programs often focus on clients with onset in the past 2 years, we found through pilot work that most referrals of “first-episode” schizophrenia from the community were clients with multiple episodes over the past few years. In order to meet the needs of the community while educating referral sources about early psychosis, we chose to expand the entry criteria of the program for the first several years, until we had reached capacity. Once we have improved our ability to catch new onset cases, we plan to restrict the criteria to the critical window3 during which most change occurs, with an emphasis on first episode. Clients receive up to 2 years of services before being discharged to other care, allowing us to maintain low caseloads of 16-18 clients per full-time clinician.
PREP is a recovery-based service that provides comprehensive evidence-based care. Clinicians conduct a thorough diagnostic intake and assessment, collaborating with family members and consumers to determine a triage of services appropriate to the needs of the individuals being served and their families. Services include algorithm-based medication management, strength-based care management, individual cognitive behavioural therapy, psychoeducational multi-family groups, vocational/educational support and substance use treatment; all are monitored for ongoing outcomes and the program works toward an integration of consumers into the highest level of functioning in their lives as possible. Figure 1 shows the consumer flow through PREP and services offered.
In developing PREP there was an initial and sustained commitment to providing multiple evidence based interventions to meet the needs of PREP clients within one service setting. The interventions chosen reflect those recommended within the Early Psychosis Consensus Statement9.
The decision to develop a service based on established evidence was supported by all partners and in line with San Francisco County’s requirement that county-funded services provide interventions that are best practice and evidence based. Table 2 summarises these interventions, training involved and fidelity monitoring.
Initially, FSA and UCSF donated resources and initiated the program on funds from private foundations and donors. At this early stage, PREP especially benefited from a GAP Founders award. This annual prize, awarded from the retail company to recognise innovative community change, included both financial support and management expertise in start up through dedicated time from Gap employees. Additionally, foundation funding was secured to support the program during its pilot phase, and FSA contributed additional monies from its donation revenue. These funds supported initial development of the program until receipt of San Francisco County MHSA Prevention and Early Intervention funding. In the early stages PREP greatly benefited from sourcing these creative funding streams to cover startup costs and we would encourage others attempting to develop services to explore alternative funding streams.
Early governance issues and lack of clear decision making processes resulted in a challenging start up. Using the donated time from the GAP foundation award, these issues were adeptly addressed by high level management from the GAP who drew upon successful business models to develop a state-of-the-art governance structure. This structure consists of five standing committees: Executive, Operations, Evaluation, Training, and Outreach. Each committee has a defined charter, scope of competency, membership, chair, meeting schedule, and performance metrics. In order to ensure a smooth collaboration between partners each committee is made up of representatives from each of the partner agencies. See Figure 2 for governance model.
Outreach to this typically difficult-to-engage population was further hampered by a sudden change of leadership in the MHA partner, contracted for advertising, public education, and client recruitment. FSA and UCSF took over outreach efforts for a six-month period despite this not being their core competency. Through this interim period, MHA continued to participate in the governance of the PREP program. Once MHA hired new leaders and recruited new staff for the PREP Program, they resumed their lead role in outreach and recruitment. Recently MHA has hired staff to work specifically on PREP outreach with a particular focus on incorporating social media to directly connect with the transitional age youth population. Additionally, MHA together with UCSF have successfully adapted academic-level presentations on early psychosis for dissemination to community clinicians and youth. The success of the partnership in collectively overcoming the temporary incapacity of one of its partners highlights a strength of this collaborative model. Outreach staff is dedicated to providing outreach and education to the community, thus releasing more time for the care managers to work directly with clients. These positions are staffed in part, by consumers and family members with first-person lived experience of mental health problems, to more effectively outreach directly to youth and families, as well as clinicians and other potential referral sources thus fulfilling two of the three important components known to be related to stigma reduction; education and contact22.
Most EI programs for psychosis in the US are offered in university-based research settings. In contrast, it was the intention of the PREP founders (FSA and UCSF) to develop a treatment approach that could be implemented in a community-based setting within the constraints of publicly-funded mental health treatment. The goal was to create a model that could be taken to scale within any county treatment system, rather than remaining a university-linked program that would only serve those few clients fortunate enough to live within a university community. One implication of this commitment was that masters-level, unlicensed non-profit therapists would primarily deliver extremely rigorous evidence-based treatments. Training community clinicians in evidence-based practices (EBP’s) with rigorous fidelity requirements is a difficult challenge for all community based social service agencies23. In approaching this program, FSA drew upon several years experience in implementing EBP’s in the adult and senior mental health programs. In these earlier efforts, FSA had learned that key elements of successful implementation included reducing high clinician caseloads, rewarding the achievement of core competencies, and mandating on-going supervision to ensure integration of new learning within PREP. Another important element was the acknowledgement that clients in community settings differ from the ‘pure’ research subjects reported in academic journals and working with clinicians to identify treatment interventions to address multiple complex difficulties within clients.
As additional community partners were brought into the partnership, it was necessary to educate them, not only in the provision of specific treatments but also in the general concepts of rigorous provision of evidence-based treatment. Key elements of the success of this effort included:
As an integral PREP partner, UCSF had to adapt to a more community-oriented model. Researchers were encouraged to adopt consumer-driven language with a strong recovery focus, in line with the treatment culture of PREP, and develop awareness of unintended stigma maintained by a medical model. Jones and Wells12 recommend that academic partners ‘should seek the mentoring of community leaders to learn the history and culture of the community and develop an awareness of their own background and history of their institution’s involvement in the community’ (p409).
From an organizational standpoint, PREP was designed to be expandable and sustainable. Through a focus on evidence-based treatments and community outreach, an initial core of services was based around a consistent treatment delivery vision. It soon became clear, however, that the program also needed flexibility “on the ground,” where staff met actual consumers, family members and community stakeholders. The PREP partners, therefore, currently envision our service as a “sustainable core,” around which is constellated “flexible elements” (see TABLE 3).
The PREP Organisational Principle: a “sustainable core” is defined as elements that have enough freestanding evidence on their own to suggest fidelity monitoring according to centralised training and guidelines. The “flexible elements” are defined as elements that require significant logistical and cultural modification to suit the resources and population of particular regions. This “flexible and sustainable” paradigm has allowed implementation of the larger program vision in feasible steps, including the organised hiring and training of program staff, and steady expansion of service delivery to consumers and families. Future directions include more direct-to-consumer marketing strategies and incorporating consumer perspectives into care delivery. Ongoing evaluation is an essential element; our evaluation and research committee closely scrutinise outcomes data, including clinical and functional outcomes and satisfaction with the service, at quarterly intervals. Evaluation will include an assessment of cost-effectiveness including comparison with local treatment as usual data. We expect to report on this within the next year. Fidelity to different PREP elements (CBTp, MFG etc) will also be monitored to ensure PREP is providing evidence-based interventions in line with the service vision.
We hope this paper presents the considerable benefits of developing an EI service through a community-academic partnership. Through a commitment to the PREP vision of recovery from psychosis, all partners were able to draw upon organisational strengths and work within a governance structure developed from a primarily business-oriented focus. We would encourage others seeking to implement EI services in settings without an integrated health system, such as the United States, to develop partnerships that address the multiple components of an EI service including evidence-based intervention for psychosis and comorbidities, knowledge of community resources, care management and outreach. In forming this partnership we were able to successfully compete for both private and public funding and utilise these to develop a comprehensive service. Our expertise in partnering has also allowed us to develop connections that bridge the gap between child and adult services in the County and to ensure that as clients are discharged from PREP they are transitioned smoothly to other services if required. We hope that by providing such a model, EI services for psychosis can be developed in multiple communities, increasing access to care and promoting recovery for this population.
Funding for PREP is provided by California Mental Health Services Act, Metta Fund, Gap Founders Fund, Episcopal Charities, and the Family Service Agency general fund. The authors would like to acknowledge the support provided by the PREP partners; Mental Health Association of San Francisco, Larkin Street Youth Services and Sojourner Truth Foster Family Service Agency.
Support was provided to the first author (KH) through a postdoctoral fellowship award from the NIH 5 R25 MH74500.
Dr. Kate V. Hardy, University of California, San Francisco.
Dr. Melissa Moore, Felton Institute, Family Service Agency of San Francisco.
Dr. Demian Rose, University of California, San Francisco.
Robert Bennett, Family Service Agency of San Francisco.
Carletta Jackson-Lane, Sojourner Truth Foster Family Service Agency.
Michael Gause, Mental Health Association, San Francisco.
Alma Jackson, Sojourner Truth Foster Family Service Agency.
Dr. Rachel Loewy, University of California, San Francisco.