Understanding the role of patient organizations in health technology assessment.
Health Expect
; 18(6): 3349-57, 2015 Dec.
Article
em En
| MEDLINE
| ID: mdl-25494707
ABSTRACT
BACKGROUND:
The involvement of patient representatives in health technology assessment is increasingly seen by policy makers and researchers as key for the deployment of patient-centred health care, but there is uncertainty and a lack of theoretical understanding regarding the knowledge and expertise brought by patient representatives and organisations to HTA processes.OBJECTIVE:
To propose a conceptually-robust typological model of the knowledge and expertise held by patient organisations. DESIGN, DATA COLLECTION ANDANALYSIS:
The study followed a case-study design. Data were collected within an international research project on patient organisations' engagement with knowledge, and included archival and documentary data, in-depth interviews with key members of the organisation and participant observation. Data analysis followed standard procedure of qualitative analysis anchored in an analytic induction approach.RESULTS:
Analysis identified three stages in the history of the patient organisation under analysis - Alzheimer's Society. In a first period, the focus is on 'caring knowledge' and an emphasis on its volunteer membership. In a transition stage, a combination of experiential, clinical and scientific knowledge is proposed in an attempt to expand its field of activism into HTA. In the most recent phase, there is a deepening of its network of associations to secure its role in the production of evidence.CONCLUSIONS:
Analysis identified an important relationship between the forms of knowledge deployed by patient organisations and the networks of expertise and policy they mobilise to pursue their activities. A model of this relationship is outlined, for the use of further research and practice on patient involvement.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Participação do Paciente
/
Avaliação da Tecnologia Biomédica
/
Instituições Filantrópicas de Saúde
/
Conhecimentos, Atitudes e Prática em Saúde
Tipo de estudo:
Health_technology_assessment
/
Prognostic_studies
/
Qualitative_research
Limite:
Humans
Idioma:
En
Revista:
Health Expect
Assunto da revista:
PESQUISA EM SERVICOS DE SAUDE
/
SAUDE PUBLICA
Ano de publicação:
2015
Tipo de documento:
Article
País de afiliação:
Reino Unido