Influencing the national policy process: the role of health consumer groups

Jones, Kathryn L.; Baggott, Rob; Allsop, Judith

doi:10.1111/j.1369-7625.2004.00238.x

Cited by 30 publications

(29 citation statements)

References 7 publications

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“…The establishment and increase in the number of PO since the 1980s is in line with the development of POs in the UK 7–9 and the USA 10,11 . Our recent observations show new POs have been established since our data collection.…”

Section: Discussionmentioning

confidence: 80%

Patient organizations in Finland: increasing numbers and great variation

Toiviainen

Vuorenkoski²,

Hemminki

2010

Health Expectations

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Objective There is very little research on patient organizations (POs), even though their numbers and influence seem to be increasing. The purpose of this study was to describe the establishment, membership, size, organization, decision making and basic funding of national POs in Finland.Setting and participants National POs (n = 130) were identified from their umbrella organizations and by Internet searches. Data were collected from POsÕ web pages (87% of POs had one), FinlandÕs Slot Machine Association (RAY, an important public financier of POs), a relevant survey done by a local TV-company, and interviews and written materials of POs.Results and conclusions Some current national POs were established around the turn of the 19 th century. The rate of establishment of new POs increased from the 1970s and particularly in the 1990s when POs were characterized by increasing specialization. POs focused on different patient groups and diseases and were founded by philanthropists, physicians, patients, parents and the drug industry. Members could be patients, patient relatives, health-care professionals and organizations. POs widely varied in memberships (20-145 000, in 2002) and in number of paid personnel (0-1395, in 2002), organizational structure and decision making. Interest groups and financiers were often represented in decision-making organs. Activities included mutual support and service production, and, increasingly, informing and lobbying. POs had wide domestic and international co-operation and networking. Drug industry marketing was visible on PO web pages. Budget sizes varied (4000-15 million euros, in 2001). The main public financier was RAY. The old national POs were large and part of national social and health care, but newer ones were often established for mutual support and lobbying. National POs are not uniform but characterized by great variation. The number of national POs is increasing suggesting tighter competition for financing and visibility in the future.

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Section: Discussionmentioning

confidence: 80%

Patient organizations in Finland: increasing numbers and great variation

Toiviainen

Vuorenkoski²,

Hemminki

2010

Health Expectations

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“…Las ORP encuestadas tienen muchos elementos en común entre ellas y con las organizaciones similares de otros países 5,8 . Muy frecuentemente responden a una necesidad no cubierta por el sistema sanitario y suelen abordar una afección médica específica.…”

Section: Tabla 4 Opiniones De Estas Organizaciones Sobre La Correspounclassified

“…Sus objetivos esenciales son mejorar las condiciones de vida de sus asociados, proveer información a diversos agentes y al público, e influir en la toma de decisiones de política sanitaria para mejorar la atención a los colectivos que representan. Quizá, una característica diferenciadora respecto a otros países es que las ORP encuestadas en este estudio sitúan a los profesionales sanitarios como sus principales interlocutores, mientras que en los trabajos realizados en el Reino Unido las relaciones con las administraciones sanitarias y los parlamentarios tienen una mayor importancia 8 . Es probable que los múltiples mecanismos de participación desarrollados en los últimos años en el National Health Service, como la incorporación de usuarios a las evaluaciones del National Institute of Clinical Excellence 9,10 y a los consejos de administración de las regiones y los trusts, sean elementos determinantes de esta diferencia.…”

Section: Tabla 4 Opiniones De Estas Organizaciones Sobre La Correspounclassified

Organización, funcionamiento y expectativas de las organizaciones representativas de pacientes. Encuesta a informadores clave

García‐Sempere

Artells

2005

Gaceta Sanitaria

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“…Where there are potentially negative effects of consumer-led control of biomedical information and policies is when there is what can only be called "competition" between disease groups and lobbies, as well as the fact that consumer groups are usually not like typical members of the public. 10,11,66,67 Competition between medical consumer groups can occur due to competitive government funding for initiatives or research programmes for certain diseases or creating a higher public profile for a disease group. It almost seems as though the bioscientific information that empowered consumers about themselves and about what was happening in their lives creates a chasm between them and other people with different biomedical interests because of political and financial competition based on biomedical grounds (e.g.…”

Section: "Bioscientific" Prejudicementioning

confidence: 99%