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Ethn Dis. 2018; 28(Suppl 2):291-294; doi:10.18865/ed.28.S2.291

The Patient Centered Outcomes Research Institute (PCORI) supports patient-centered clinical comparative effectiveness research (CER) including health disparities and engagement portfolios. In 2013, PCORI launched the Pipeline to Proposal (P2P) mechanism to support development of novel patient- and stakeholder-centered partnerships focused on designing clinical CER funding proposals. By providing a tiered structure of successive small contracts and technical assistance, the P2P mechanism encourages development of new research partnerships among diverse stakeholders. As a comparatively new field, patient-centered outcomes research (PCOR) has few well-delineated methods for engaging patients and other non-scientists in effective teams with academics or clinicians to develop and implement rigorous, scientific research proposals. Community partnered participatory research (CPPR) provides a useful frame-work for structuring new partnerships. In this article we highlight the origins, development, and prospects of three current examples of funded P2P initiatives based in New Orleans and Los Angeles. We outline how these projects – Prisoner to Patient, the NOLA Partnership, and Resilience Among African American Men – use CPPR principles. We also describe how they have collaborated with, and contributed to, a two-way learning and knowledge exchange among members of the PCORI-funded Community and Patient Partnered Research Network. Lessons learned may be applicable to other groups planning to create new partnerships focused on implementing PCOR.

Intimate partner violence (IPV) is a persistent public health problem in the United States, with an estimated one in three women experiencing rape, physical violence, and/or stalking by an intimate partner within her lifetime. Non-Hispanic Black women disproportionately experience IPV, but there has been limited success in implementing culturally appropriate prevention programs and services for members of this population. Community health workers (CHWs) are trusted members of under-resourced communities who provide reliable health information and improve the cultural appropriateness of service delivery and may be a vital resource for developing new IPV interventions. Guided by the principles of community partnered participatory research, we developed the CHW-led Safe Spaces project, which aimed to establish a strong academic-community partnership to focus on issues related to experiences of IPV and the prevention of IPV in New Orleans. In this article, we describe the development of our partnership including the formation of an advisory board, creation of a broadbased stakeholder coalition, offering a community partnered participatory research training, conducting IPV education and outreach, and establishing a research agenda. Our processes are replicable and lessons learned may be relevant to other groups seeking to address IPV by leveraging the strengths of community-academic collaborations and CHWs.

Background Collaborations involving partnerships between academic researchers and knowledge users can improve the relevance and potential adoption of evidence in health care practices and decision-making. However, descriptions of partnering practice characteristics are often limited to self-report from the lead academic researcher, with no comparison among team members. The primary objective of this study was to determine the extent to which nominated principal investigator (NPI) respondents of a questionnaire about funded Canadian partnered health research projects agreed with other team researchers and knowledge users (KU) on partnership practices. Methods We conducted secondary analysis of a subset of data from 106 respondents from 53 partnered Canadian health research projects funded between 2011 and 2019. We organized projects into NPI-researcher and NPI-KU dyads, and analyzed 23 binary variables about types of knowledge users involved and approaches for involving knowledge users in the project. We calculated Kappa scores and examined if agreement varied by dyad type and time across three blocks of years of project funding using a two-way ANOVA. We also explored how agreement varied by question type (independent t-test) and by variable (Pearson Chi-Square). Results Overall agreement on partnership practices was minimal (mean Kappa = 0.38, SD 0.27). NPI- researcher dyads had higher Kappa scores than NPI-KU dyads ( p  = 0.03). There were no significant differences across funding year blocks ( p  > 0.05). Agreement on the types of knowledge users engaged in the project was weak (mean Kappa = 0.43, SD 0.32), and there was no difference by dyad type. Agreement was minimal on the approaches for involving knowledge users the project (mean Kappa = 0.28, SD 0.31), and NPI-researcher dyads had significantly higher Kappa scores than NPI-KU dyads ( p  = 0.03). Variable-level agreement ranged between 47 and 98%. Conclusions The overall low level of agreement among team members responding about the same project has implications for the continued study and practice of partnered health research. These findings highlight the caution that must be used in interpreting retrospectively assessed self-report practices. Moving forward, prospective documentation of partnered research practices offers the greatest potential to overcome the limitations of recall-based retrospective analyses.

PurposeA disconnect often exists between those with the expertise to manage and analyze complex, multi-source data sets, and the clinical, social services, advocacy, and public health professionals who can pose the most relevant questions and best apply the answers. We describe development and implementation of a cancer informatics infrastructure aimed at broadening the usability of community cancer data to inform cancer control research and practice; and we share lessons learned.MethodsWe built a multi-level database known as The Ohio Cancer Assessment and Surveillance Engine (OH-CASE) to link data from Ohio’s cancer registry with community data from the U.S. Census and other sources. Space—and place-based characteristics were assigned to individuals according to residential address. Stakeholder input informed development of an interface for generating queries based on geographic, demographic, and disease inputs and for outputting results aggregated at the state, county, municipality, or zip code levels.ResultsOH-CASE contains data on 791,786 cancer cases diagnosed from 1/1/2006 to 12/31/2018 across 88 Ohio counties containing 1215 municipalities and 1197 zip codes. Stakeholder feedback from cancer center community outreach teams, advocacy organizations, public health, and researchers suggests a broad range of uses of such multi-level data resources accessible via a user interface.ConclusionOH-CASE represents a prototype of a transportable model for curating and synthesizing data to understand cancer burden across communities. Beyond supporting collaborative research, this infrastructure can serve the clinical, social services, public health, and advocacy communities by enabling targeting of outreach, funding, and interventions to narrow cancer disparities.

Background Young adults with type 1 diabetes (T1D) face complex health challenges, including a heightened risk for distress. To counter this distress, there is a need to develop accessible, acceptable comprehensive care solutions that integrate diabetes and mental health care to enhance self‐efficacy and counter mental health challenges in this population. Objective To describe the engagement of individuals with lived experience of T1D and mental health challenges in the development of a recruitment strategy to support the co‐design of an innovative integrated care programme. Results Seven individuals with lived experience formed a Partner Advisory Council (PAC) to recruit young adults (18–29 years old) living with T1D, their friends or family and health researchers and professionals in co‐design interviews (n = 19) and co‐design events (n = 12). The PAC played a key role in developing a comprehensive recruitment strategy, overcoming traditional barriers and stigmas in the design of an integrated model of care. Conclusion Assuming the presence of mental health challenges in young adults living with T1D during recruitment had far‐reaching impacts on the development of a whole‐person and integrated diabetes and mental health care solution. The efficient recruitment of this sample provided invaluable insights into the nuanced challenges experienced by young adults with T1D, the individual skills developed in response to their mental health challenges and the ways that this understanding can shape future programming to support mental health, quality of life and well‐being. The ongoing involvement of the PAC as co‐researchers underscores the enduring impact of patient engagement in developing integrated care solutions. Patient or Public Contribution The co‐design of the TECC‐T1D3 model was enriched by the invaluable contributions of individuals with lived experience. This included the engagement of a diverse PAC in the recruitment of participants in co‐design interviews and co‐design events. PAC members actively participated in research decision‐making with their insights informing a robust recruitment strategy. Beyond recruitment, PAC members continue to serve as co‐researchers, shaping ongoing research and actively contributing to the TECC‐T1D3 project. Six PAC members are co‐authors on this manuscript.

Background Juvenile idiopathic arthritis (JIA) refers to a heterogeneous group of rheumatic conditions in children. Novel drugs have greatly improved disease outcomes; however, outcomes are impacted by limited awareness of the importance of early diagnosis and adequate treatment, and by differences in access across health systems. As a result, patients with JIA continue to be at risk for short- and long-term morbidity, as well as impacts on virtually all aspects of life of the child and family. Main body Literature on the socioeconomic burden of JIA is largely focused on healthcare costs, and the impact of JIA on patients, families, and communities is not well understood. High quality evidence on the impact of JIA is needed to ensure that patients are receiving necessary support, timely diagnostics, and adequate treatment, and to inform decision making and resource allocation. This commentary introduces the European Joint Programme on Rare Diseases: Producing an Arthritis Value Framework with Economic Evidence: Paving the Way for Rare Childhood Diseases (PAVE) project, which will co-develop a patient-informed value framework to measure the impact of JIA on individuals and on society. With a patient-centered approach, fundamental to PAVE is the involvement of three patient advocacy organizations from Canada, Israel, and Europe, as active research partners co-designing all project phases and ensuring robust patient and family engagement. The framework will build on the findings of projects from six countries: Canada, Germany, Switzerland, Spain, Israel, and Belgium, exploring costs, outcomes (health, well-being), and unmet needs (uveitis, mental health, equity). Conclusion This unique international collaboration will combine evidence on costs (from family to societal), outcomes (clinical, patient and family outcomes), and unmet needs, to co-design and build a framework with patients and families to capture the full impact of JIA. The framework will support the development of high-quality evidence, encompassing economic and clinical considerations, unmet needs, and patient perspectives, to inform equitable resource allocation, health system planning, and quality of care better aligned with the needs of children with JIA, their families, and communities. Knowledge gained from this novel approach may pave the way forward to be applied more broadly to other rare childhood diseases.

Background Integrated knowledge translation (IKT), or research co-production, is a research approach where researchers and knowledge users carry out a study as equal partners. A growing evidence base demonstrates that IKT produces research findings that are useful, usable and used. Despite knowing how IKT works, we have yet to ascertain how it operates. We conducted a realist review to examine the key mechanisms thought to explain how IKT approaches work in relation to the generation of research in the healthcare sector. Methods The research question was the following: what are the necessary conditions (context) and key mechanisms that explain the success of IKT in the healthcare sector? We conducted the review in two phases. During phase 1, we collaborated with knowledge users and scoped the literature to develop preliminary program theories. In phase 2, we inductively tested the preliminary program theories against the literature. We searched OVID Medline, Embase, PsycINFO, the Cumulative Index of Nursing and Allied Health Literature, Social Sciences Abstracts, and ABI Inform for empirical articles published between 2002 and 2017. An updated search included Embase and OVID Medline articles published between 2017 and 2020. The review includes 84 papers. We included articles written in English that focused on the health sector; encompassed the co-generation of research with researchers, policy-makers, administrators and/or practitioners; and evaluated the IKT approach. In analysing the retained articles, we produced three program theories by looking for common patterns and challenging and refining these theories. Results We postulate three program theories about how teams of researchers and knowledge users work to generate research. We identified three important conditions: infrastructure, role clarity and power sharing. Under particular infrastructure arrangements, effective partnerships are mechanisms that lead to the production of research findings relevant to knowledge users. Role clarity also triggers effective partnerships. With power sharing, synergy is a mechanism that leads to the use of findings. Conclusions We identified different conditions (contextual factors), including infrastructure, role clarity and power sharing, in which IKT produces research findings that are of relevance to knowledge users and used in health settings. Effective partnerships are necessary but an insufficient mechanism for actual use of research findings, and must occur before the mechanism of partnership synergy. This work contributes to our understanding of how to enhance the uptake of evidence by presenting three program theories and a consolidated, mid-range theory of IKT.