RESUMEN
The era of big data, loosely defined as the development and analysis of large or complex data sets, brings new opportunities to empower patients and their families to generate, collect, and use their health information for both clinical and research purposes. In 2013 the Patient-Centered Outcomes Research Institute launched a large national research network, PCORnet, that includes both clinical and patient-powered research networks. This article describes these networks, their potential uses, and the challenges they face. The networks are engaging patients, family members, and caregivers in four key ways: contributing data securely, with privacy protected; including diverse and representative groups of patients in research; prioritizing research questions, participating in research, and disseminating results; and participating in the leadership and governance of patient-powered research networks. If technical, regulatory, and organizational challenges can be overcome, PCORnet will allow research to be conducted more efficiently and cost-effectively and results to be disseminated quickly back to patients, clinicians, and delivery systems to improve patient health.
Asunto(s)
Investigación Biomédica , Redes de Comunicación de Computadores/organización & administración , Conjuntos de Datos como Asunto , Participación del Paciente , Atención Dirigida al Paciente , Seguridad Computacional , Registros Electrónicos de Salud/organización & administración , Medicina Basada en la Evidencia , Humanos , Informática Médica , Evaluación de Resultado en la Atención de Salud/organización & administraciónRESUMEN
Patient participation is increasingly recognized as a key component in the redesign of health care processes and is advocated as a means to improve patient safety. The concept has been successfully applied to various areas of patient care, such as decision making and the management of chronic diseases. We review the origins of patient participation, discuss the published evidence on its efficacy, and summarize the factors influencing its implementation. Patient-related factors, such as acceptance of the new patient role, lack of medical knowledge, lack of confidence, comorbidity, and various sociodemographic parameters, all affect willingness to participate in the health care process. Among health care workers, the acceptance and promotion of patient participation are influenced by other issues, including the desire to maintain control, lack of time, personal beliefs, type of illness, and training in patient-caregiver relationships. Social status, specialty, ethnic origin, and the stakes involved also influence patient and health care worker acceptance. The London Declaration, endorsed by the World Health Organization World Alliance for Patient Safety, calls for a greater role for patients to improve the safety of health care worldwide. Patient participation in hand hygiene promotion among staff to prevent health care-associated infection is discussed as an illustrative example. A conceptual model including key factors that influence participation and invite patients to contribute to error prevention is proposed. Further research is essential to establish key determinants for the success of patient participation in reducing medical errors and in improving patient safety.
Asunto(s)
Errores Médicos/prevención & control , Participación del Paciente , Enfermedad Crónica , Desinfección de las Manos , Investigación sobre Servicios de Salud , Humanos , Modelos Teóricos , Planificación de Atención al Paciente , Relaciones Médico-Paciente , Relaciones Profesional-Paciente , RolAsunto(s)
Kernicterus , Grupos de Autoayuda , Niño , Humanos , Lactante , Padres , Sistema de Registros , Apoyo a la Investigación como AsuntoRESUMEN
Medical liability reform should be aligned with a patient-centered, systems-based approach to preventing injury. Lessons learned about medical risk are now buried by the legal system, and communication about risk is haphazard among health care providers and across the interfaces of our legal, regulatory, and health care systems. Tort reform can be a vehicle for breaking down systemic barriers. Proposed reforms include (1) requiring disclosure of medical errors and restricting the use of information disclosed as evidence of guilt; (2) outlawing confidentiality agreements when malpractice cases are settled; (3) abolishing the National Practitioner Data Bank; and (4) establishing a national patient safety authority.