Women's Health Information-Seeking Experiences and Preferences for Health Communications on FDA-Regulated Products: A Qualitative Study in Urban Area.

A key part of any effort to ensure informed health care decision-making among the public is access to reliable and relevant health-related information. We conducted focus groups with women from three generations across the Baltimore-Washington metropolitan area to explore their information-seeking motivations, perceptions, challenges, and preferences regarding three FDA-regulated products: drugs, vaccines, and medical devices. The youngest generation discussed seeking health information for their children; the other two sought information for their own needs.

The Experiences and Needs of Families of Comatose Patients After Cardiac Arrest and Severe Neurotrauma: The Perspectives of National Key Stakeholders During a National Institutes of Health-Funded Workshop.

Objectives: Severe acute brain injury (SABI) from cardiac arrest and traumatic brain injury happens suddenly and unexpectedly, carrying high potential for lifelong disability with substantial prognostic uncertainty. Comprehensive assessments of family experiences and support needs after SABI are lacking. Our objective is to elicit "on-the-ground" perspectives about the experiences and needs of families of patients with SABI.

What works when: mapping patient and stakeholder engagement methods along the ten-step continuum framework.

This study provides a recommended 'patient engagement translation table' that identifies evidence-based methods for meaningful patient engagement along a ten-step framework for continuous engagement. We used a mixed methods research design to collect data on preferred engagement methods, including an environmental scan of available literature, interviews and focus groups with patient-centered outcomes research stakeholders to match methods with research steps and a modified Delphi process with subject matter experts to create the final translation table. Evidence-based engagement methods included community partnerships, focus groups, interviews, meetings, sharing print materials, social media, storytelling, surveys and including patients as research team members.

The development of a clinical outcomes survey research application: Assessment Center.

Introduction: The National Institutes of Health sponsored Patient-Reported Outcome Measurement Information System (PROMIS) aimed to create item banks and computerized adaptive tests (CATs) across multiple domains for individuals with a range of chronic diseases.

Purpose: Web-based software was created to enable a researcher to create study-specific Websites that could administer PROMIS CATs and other instruments to research participants or clinical samples. This paper outlines the process used to develop a user-friendly, free, Web-based resource (Assessment Center) for storage, retrieval, organization, sharing, and administration of patient-reported outcomes (PRO) instruments.

Using focus groups to inform the Neuro-QOL measurement tool: exploring patient-centered, health-related quality of life concepts across neurological conditions.

Measurement of health-related quality of life (HRQL) is of particular importance in neurology clinical trials, where differences in clinical measurements or laboratory data may not translate into significant benefit to the patients. A fundamental consideration in the development and use of an HRQL instrument is whether the instrument's conceptual framework accurately reflects the HRQL experience of the population of interest. This study details the findings from formative research that focused on the identification of content area for an HRQL measurement system in neurology.