Health Policy blog covering advocacy developments and health system initiatives around the world in the areas of:
Health Policy blog covering advocacy developments and health system initiatives around the world in the areas of:
Many patient communities struggle with building capabilities due to lack of resources and time to manage competing priorities. This program provides a potential framework for creating a responsive and actionable training program that collectively addresses the needs and priorities of patient organizations. The program also provided an important opportunity for like-minded groups to share their needs and gain support in a collective environment.
Presented at the European Alliance of Associations for Rheumatology Congress 2023 (EULAR23)
Through conversations with patient representatives and medical experts across the six World Health Organization (WHO) regions, members of the Rare Diseases International (RDI) team identified and prioritised ten common areas of need impacting the diagnosis, care, and treatment of the rare disease community globally. This work was done as part of a more extensive global Population Needs Assessment Study, conducted by RDI to substantiate the need and propose a framework for developing a Collaborative Global Network for Rare Disease.
In this white paper, Takeda describes three opportunities for shortening the time to diagnosis for all patients with rare diseases, including those from communities historically marginalized by the health care system.
Ghost author
The second edition of the Pharmaceutical and Medical Device Compliance Manual includes guidance to help companies develop a compliance program based on government’s expectations and ethical business practices.
Author of chapter on pharmaceutical industry interactions with patient organizations
In anticipation of the potentially disease-modifying products reaching regulatory review, Parent Project Muscular Dystrophy (PPMD) formally initiated a national Duchenne Newborn Screening (DNBS) effort in December 2014 to build public health infrastructure for newborn screening (NBS) for Duchenne in the United States. This review in the International Journal of Neonatal Screening details the organization and effort of the US DNBS program to develop the evidence supporting the implementation of NBS for DMD.
Patient groups are becoming actively involved in shaping the drug, diagnostic and device research agenda. These groups, known as patient-led research networks (PLRNs), understand the needs of the patients and the carers they serve. Their efforts, largely independent of industry partners, have already resulted in compounds, diagnostics and devices and relevant insights attractive to industry. This article in the Business Development & Licensing Journal highlights opportunities to enhance companies’ business objectives for in- and out-licensing by partnering with PLRNs.
News media provide important health information for the US population. Disparities in access to healthcare for minority populations create a need to evaluate the quality and volume of information available in mainstream and targeted ethnic media. Focusing on the Hispanic American population, this study compares information on healthcare reform available in English-language and Spanish-language newspapers following the signing of the Patient Protection and Affordable Care Act into law on March 23, 2010.
Presented at 139st APHA Annual Meeting and Exposition 2011
