author_facet Staniszewska, Sophie
Crowe, Sally
Badenoch, Douglas
Edwards, Carol
Savage, Jan
Norman, Will
Staniszewska, Sophie
Crowe, Sally
Badenoch, Douglas
Edwards, Carol
Savage, Jan
Norman, Will
author Staniszewska, Sophie
Crowe, Sally
Badenoch, Douglas
Edwards, Carol
Savage, Jan
Norman, Will
spellingShingle Staniszewska, Sophie
Crowe, Sally
Badenoch, Douglas
Edwards, Carol
Savage, Jan
Norman, Will
Health Expectations
The PRIME project: developing a patient evidence‐base
Public Health, Environmental and Occupational Health
author_sort staniszewska, sophie
spelling Staniszewska, Sophie Crowe, Sally Badenoch, Douglas Edwards, Carol Savage, Jan Norman, Will 1369-6513 1369-7625 Wiley Public Health, Environmental and Occupational Health http://dx.doi.org/10.1111/j.1369-7625.2010.00590.x <jats:title>Abstract</jats:title><jats:p><jats:bold>Background </jats:bold> The concept of evidence has become firmly rooted in health care, with most importance placed on the outcome of research in clinical and economic spheres. Much less emphasis is placed on the patient’s contribution to evidence which remains relatively vague, of low status and often difficult to integrate with other forms of knowledge.</jats:p><jats:p><jats:bold>Aim </jats:bold> This article proposes a concept of patient‐based evidence, to complement clinical and economic forms of evidence, and demonstrates one way in which it has been operationalized. The PRIME project developed a patient evidence‐base to capture the lived experience of individuals with myalgic encephalitis (ME) or chronic fatigue syndrome (CFS).</jats:p><jats:p><jats:bold>Design </jats:bold> Interviews were performed with 40 individuals with ME/CFS who varied in a range of demographic characteristics, including age, gender, and how severely affected individuals were.</jats:p><jats:p><jats:bold>Results </jats:bold> PRIME has developed a patient evidence‐base which has an extensive array of experiences data to provide researchers, clinicians and others with an in‐depth insight into the lived experience of ME/CFS that can be used and analysed. Data are grouped into a wide range of themes, which can be downloaded and used in a variety of ways as a source of evidence to enable understanding of the lived experience of ME/CFS and so contribute to the development of a more patient‐focused research agenda in ME/CFS.</jats:p><jats:p><jats:bold>Conclusions </jats:bold> While patient‐based evidence used in the PRIME Project provides a useful start, further work is required to develop this area conceptually and methodologically, particularly in relation to how patient‐based evidence can be considered alongside clinical and economic evidence.</jats:p> The PRIME project: developing a patient evidence‐base Health Expectations
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title The PRIME project: developing a patient evidence‐base
title_unstemmed The PRIME project: developing a patient evidence‐base
title_full The PRIME project: developing a patient evidence‐base
title_fullStr The PRIME project: developing a patient evidence‐base
title_full_unstemmed The PRIME project: developing a patient evidence‐base
title_short The PRIME project: developing a patient evidence‐base
title_sort the prime project: developing a patient evidence‐base
topic Public Health, Environmental and Occupational Health
url http://dx.doi.org/10.1111/j.1369-7625.2010.00590.x
publishDate 2010
physical 312-322
description <jats:title>Abstract</jats:title><jats:p><jats:bold>Background </jats:bold> The concept of evidence has become firmly rooted in health care, with most importance placed on the outcome of research in clinical and economic spheres. Much less emphasis is placed on the patient’s contribution to evidence which remains relatively vague, of low status and often difficult to integrate with other forms of knowledge.</jats:p><jats:p><jats:bold>Aim </jats:bold> This article proposes a concept of patient‐based evidence, to complement clinical and economic forms of evidence, and demonstrates one way in which it has been operationalized. The PRIME project developed a patient evidence‐base to capture the lived experience of individuals with myalgic encephalitis (ME) or chronic fatigue syndrome (CFS).</jats:p><jats:p><jats:bold>Design </jats:bold> Interviews were performed with 40 individuals with ME/CFS who varied in a range of demographic characteristics, including age, gender, and how severely affected individuals were.</jats:p><jats:p><jats:bold>Results </jats:bold> PRIME has developed a patient evidence‐base which has an extensive array of experiences data to provide researchers, clinicians and others with an in‐depth insight into the lived experience of ME/CFS that can be used and analysed. Data are grouped into a wide range of themes, which can be downloaded and used in a variety of ways as a source of evidence to enable understanding of the lived experience of ME/CFS and so contribute to the development of a more patient‐focused research agenda in ME/CFS.</jats:p><jats:p><jats:bold>Conclusions </jats:bold> While patient‐based evidence used in the PRIME Project provides a useful start, further work is required to develop this area conceptually and methodologically, particularly in relation to how patient‐based evidence can be considered alongside clinical and economic evidence.</jats:p>
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author Staniszewska, Sophie, Crowe, Sally, Badenoch, Douglas, Edwards, Carol, Savage, Jan, Norman, Will
author_facet Staniszewska, Sophie, Crowe, Sally, Badenoch, Douglas, Edwards, Carol, Savage, Jan, Norman, Will, Staniszewska, Sophie, Crowe, Sally, Badenoch, Douglas, Edwards, Carol, Savage, Jan, Norman, Will
author_sort staniszewska, sophie
container_issue 3
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description <jats:title>Abstract</jats:title><jats:p><jats:bold>Background </jats:bold> The concept of evidence has become firmly rooted in health care, with most importance placed on the outcome of research in clinical and economic spheres. Much less emphasis is placed on the patient’s contribution to evidence which remains relatively vague, of low status and often difficult to integrate with other forms of knowledge.</jats:p><jats:p><jats:bold>Aim </jats:bold> This article proposes a concept of patient‐based evidence, to complement clinical and economic forms of evidence, and demonstrates one way in which it has been operationalized. The PRIME project developed a patient evidence‐base to capture the lived experience of individuals with myalgic encephalitis (ME) or chronic fatigue syndrome (CFS).</jats:p><jats:p><jats:bold>Design </jats:bold> Interviews were performed with 40 individuals with ME/CFS who varied in a range of demographic characteristics, including age, gender, and how severely affected individuals were.</jats:p><jats:p><jats:bold>Results </jats:bold> PRIME has developed a patient evidence‐base which has an extensive array of experiences data to provide researchers, clinicians and others with an in‐depth insight into the lived experience of ME/CFS that can be used and analysed. Data are grouped into a wide range of themes, which can be downloaded and used in a variety of ways as a source of evidence to enable understanding of the lived experience of ME/CFS and so contribute to the development of a more patient‐focused research agenda in ME/CFS.</jats:p><jats:p><jats:bold>Conclusions </jats:bold> While patient‐based evidence used in the PRIME Project provides a useful start, further work is required to develop this area conceptually and methodologically, particularly in relation to how patient‐based evidence can be considered alongside clinical and economic evidence.</jats:p>
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spelling Staniszewska, Sophie Crowe, Sally Badenoch, Douglas Edwards, Carol Savage, Jan Norman, Will 1369-6513 1369-7625 Wiley Public Health, Environmental and Occupational Health http://dx.doi.org/10.1111/j.1369-7625.2010.00590.x <jats:title>Abstract</jats:title><jats:p><jats:bold>Background </jats:bold> The concept of evidence has become firmly rooted in health care, with most importance placed on the outcome of research in clinical and economic spheres. Much less emphasis is placed on the patient’s contribution to evidence which remains relatively vague, of low status and often difficult to integrate with other forms of knowledge.</jats:p><jats:p><jats:bold>Aim </jats:bold> This article proposes a concept of patient‐based evidence, to complement clinical and economic forms of evidence, and demonstrates one way in which it has been operationalized. The PRIME project developed a patient evidence‐base to capture the lived experience of individuals with myalgic encephalitis (ME) or chronic fatigue syndrome (CFS).</jats:p><jats:p><jats:bold>Design </jats:bold> Interviews were performed with 40 individuals with ME/CFS who varied in a range of demographic characteristics, including age, gender, and how severely affected individuals were.</jats:p><jats:p><jats:bold>Results </jats:bold> PRIME has developed a patient evidence‐base which has an extensive array of experiences data to provide researchers, clinicians and others with an in‐depth insight into the lived experience of ME/CFS that can be used and analysed. Data are grouped into a wide range of themes, which can be downloaded and used in a variety of ways as a source of evidence to enable understanding of the lived experience of ME/CFS and so contribute to the development of a more patient‐focused research agenda in ME/CFS.</jats:p><jats:p><jats:bold>Conclusions </jats:bold> While patient‐based evidence used in the PRIME Project provides a useful start, further work is required to develop this area conceptually and methodologically, particularly in relation to how patient‐based evidence can be considered alongside clinical and economic evidence.</jats:p> The PRIME project: developing a patient evidence‐base Health Expectations
spellingShingle Staniszewska, Sophie, Crowe, Sally, Badenoch, Douglas, Edwards, Carol, Savage, Jan, Norman, Will, Health Expectations, The PRIME project: developing a patient evidence‐base, Public Health, Environmental and Occupational Health
title The PRIME project: developing a patient evidence‐base
title_full The PRIME project: developing a patient evidence‐base
title_fullStr The PRIME project: developing a patient evidence‐base
title_full_unstemmed The PRIME project: developing a patient evidence‐base
title_short The PRIME project: developing a patient evidence‐base
title_sort the prime project: developing a patient evidence‐base
title_unstemmed The PRIME project: developing a patient evidence‐base
topic Public Health, Environmental and Occupational Health
url http://dx.doi.org/10.1111/j.1369-7625.2010.00590.x