An examination and synthesis of registry stakeholder perspectives has not been previously reported in the literature.
We report the first examination and synthesis of stakeholder perspectives on registries broadly with a specific focus on neurological patient registries.
To inform the development of future neurological registries we examined stakeholder perspectives about such registries through a literature review followed by 3 focus groups comprised of a total of 15 neurological patients and 12 caregivers.
Involved and committed leadership led to the success of the Izmir Cancer Registry and its demonstration that a strong champion from within can advocate with various stakeholders for a registry's progress.
According to key informants, setting up registries was time-intensive, but often certain stakeholders wanted a new registry created quickly to collect quality data and function efficiently.
We performed a comprehensive review of the literature pertaining to stakeholder perspectives on patient registries to determine the current state of understanding.
The aim of this study was to conduct a "first-look" at the stakeholder perspectives of patient registries to summarize our understanding of the literature and to conduct focus groups in order to assess relevance to neurological patients in our region.
However, the NQR itself does not initiate quality improvement but it is local stakeholders in charge of the registry, registering data, and/or managing the stroke unit who do.
Rather than apply strict inclusion and exclusion criteria to abstracts reviewed we applied two broad inclusion criteria: 1) the article pertained to patient registries; and 2) the article reported perceptions about patient registries from any relevant stakeholder.
Identified stakeholders from the literature review included registry participants (i.e. patients), clinical care providers (treating physicians often in possession of medical data), research ethics boards, and data users (researchers, governmental agencies, health medical organizations).
All clinical stakeholders described a responsibility for managing the registry and establishing high coverage, yet some also worked with compilation and communication of data to fellow staff and managers.
