Continuum Of Evidence Research Articles

Building a Sustainable Learning Health Care System for Pregnant and Lactating People: Interview Study Among Data Access Providers.

In many areas of health care, learning health care systems (LHSs) are seen as promising ways to accelerate research and outcomes for patients by reusing health and research data. For example, considering pregnant and lactating people, for whom there is still a poor evidence base for medication safety and efficacy, an LHS presents an interesting way forward. Combining unique data sources across Europe in an LHS could help clarify how medications affect pregnancy outcomes and lactation exposures. In general, a remaining challenge of data-intensive health research, which is at the core of an LHS, has been obtaining meaningful access to data. These unique data sources, also called data access providers (DAPs), are both public and private organizations and are important stakeholders in the development of a sustainable and ethically responsible LHS. Sustainability is often discussed as a challenge in LHS development. Moreover, DAPs are increasingly expected to move beyond regulatory compliance and are seen as moral agents tasked with upholding ethical principles, such as transparency, trustworthiness, responsibility, and community engagement. This study aims to explore the views of people working for DAPs who participate in a public-private partnership to build a sustainable and ethically responsible LHS. Using a qualitative interview design, we interviewed 14 people involved in the Innovative Medicines Initiative (IMI) ConcePTION (Continuum of Evidence from Pregnancy Exposures, Reproductive Toxicology and Breastfeeding to Improve Outcomes Now) project, a public-private collaboration with the goal of building an LHS for pregnant and lactating people. The pseudonymized transcripts were analyzed thematically. A total of 3 themes were identified: opportunities and responsibilities, conditions for participation and commitment, and challenges for a knowledge-generating ecosystem. The respondents generally regarded the collaboration as an opportunity for various reasons beyond the primary goal of generating knowledge about medication safety during pregnancy and lactation. Respondents had different interpretations of responsibility in the context of data-intensive research in a public-private network. Respondents explained that resources (financial and other), scientific output, motivation, agreements collaboration with the pharmaceutical industry, trust, and transparency are important conditions for participating in and committing to the ConcePTION LHS. Respondents also discussed the challenges of an LHS, including the limitations to (real-world) data analyses and governance procedures. Our respondents were motivated by diverse opportunities to contribute to an LHS for pregnant and lactating people, primarily centered on advancing knowledge on medication safety. Although a shared responsibility for enabling real-world data analyses is acknowledged, their focus remains on their work and contribution to the project rather than on safeguarding ethical data handling. The results of our interviews underline the importance of a transparent governance structure, emphasizing the trust between DAPs and the public for the success and sustainability of an LHS.

A Continuum of Evidence on Evidence-Based Programs: A New Resource for Use in Military Social Service Delivery

ABSTRACTEvidence-based programs can promote well-being; however, barriers to implementation exist. Barriers include lack of time to find evidence and lack of expertise among some practitioners in reading and evaluating evidence. A partnership among the Department of Defense Office of Military Community and Family Policy, the National Institute for Food and Agriculture, and Pennsylvania State University resulted in the development of a new information repository. The Clearinghouse for Military Family Readiness at Penn State (Clearinghouse) and the Clearinghouse's Continuum of Evidence (Continuum) were designed to assist professionals in identifying evidence-based programs that can improve the well-being of military families (http://www.militaryfamilies.psu.edu). The development of the Continuum included reviews of existing rating systems, expert review, practical review, and inter-rater agreement checks. The Clearinghouse contains information on over 1,000 programs relevant to both civilian and military families. Topics include parenting, coping and resilience, child behavior, obesity, alcohol and substance use prevention, and mental health treatment; target audiences include children, youth, adults, and families. Empirical evidence and systematized criteria are used to place programs as Effective (Randomized Control Trial), Effective (Quasi-experimental), Promising, Unclear (+), Unclear (ø), Unclear (−), or Ineffective. The Clearinghouse provides information and encourages professionals to make informed decisions based on their needs and resources.

Reducing barriers to evidence-based practice with military families: Clearinghouse for military family readiness

abstractEvidence-based practice (EBP) improves health and well-being by providing current scientific evidence in treating a wide range of military family challenges. However, there are a number of real and perceived barriers to the adoption of this practice. To help reduce barriers, the Department of Defense partnered with the National Institute of Food and Agriculture to fund the development of the Clearinghouse for Military Family Readiness at the Pennsylvania State University. The Clearinghouse provides a growing web-based repository of information on more than 900 programs and practices that can be used by military personnel and their families. These programs have been closely vetted by a team of research and evaluation scientists and placed on a continuum of evidence, indicating the level of empirical support for each program (i.e., Effective, Promising, Unclear, and Ineffective). The Clearinghouse also provides live technical assistance to advise social service professionals working with military families on the adoption, implementation, and evaluation of evidence-based programs and practices. In this article we describe how military and civilian social service practitioners can benefit from partnering with the Clearinghouse.

Quality of life diagnosis and therapy as complex intervention for improvement of health in breast cancer patients: delineating the conceptual, methodological, and logistic requirements (modeling)

A system for quality of life (QoL) diagnosis and therapy in breast cancer patients was developed according to the Medical Research Council (MRC) framework of complex interventions. Along MRC's five phases in the continuum of evidence, the present paper deals with phase I: modeling (i.e., delineating the conceptual, methodological, and logistic requirements). Theoretical background is a new conceptualization of QoL that provides a rational basis to diagnose "diseased" QoL. A care pathway as the central part of modeling is composed of the following interrelated structural elements: patients (n = 170), clinicians (n = 10), experts in a quality of life unit (n = 5), coordinating practitioners (n = 38), local opinion leaders (n = 12), and professional therapists for QoL enhancing therapies (n = 75). Networking of these structural elements was achieved by clinical algorithm. In the clinical center, the patient and doctor delivered a questionnaire (EORTC) and health status report. The QoL unit transformed it into a profile and experts' report. The coordinating practitioner transformed the latter into a decision on QoL therapy and the care pathway ended with the professional therapists. Implementation of this system used a multifaceted strategy including educational outreach visits, local opinion leaders, and quality circles. The suffering cancer patient is the main focus of this QoL diagnosis and therapy system. It will have to pass the rigorous test of a definitive randomized trial.