Attitudes toward patient expertise in chronic illness

Thorne, Sally; Nyhlin, Kerstin Ternulf; Paterson, Barbara

doi:10.1016/s0020-7489(00)00007-9

Cited by 142 publications

(147 citation statements)

References 32 publications

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“…Oliveira et al (2015) found that 36% of all patients with a chronic condition or their relatives innovated in relation to their needs. These findings are in line with a growing body of literature that indicates that patients are gaining increased medical expertise in relation to their disease (Budych et al 2012;Hartzler and Pratt 2011;Greenhalgh 2009;Thorne et al 2000).…”

Section: Discussionsupporting

confidence: 88%

Are Patients and Relatives the Better Innovators? The Case of Medical Smartphone Applications

Goeldner

Herstatt

2016

SSRN Journal

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Standard-Nutzungsbedingungen:Die Dokumente auf EconStor dürfen zu eigenen wissenschaftlichen Zwecken und zum Privatgebrauch gespeichert und kopiert werden.Sie dürfen die Dokumente nicht für öffentliche oder kommerzielle Zwecke vervielfältigen, öffentlich ausstellen, öffentlich zugänglich machen, vertreiben oder anderweitig nutzen.Sofern die Verfasser die Dokumente unter Open-Content-Lizenzen (insbesondere CC-Lizenzen) zur Verfügung gestellt haben sollten, gelten abweichend von diesen Nutzungsbedingungen die in der dort genannten Lizenz gewährten Nutzungsrechte. www.econstor.eu Our findings show that users develop around 46% of all medical smartphone applications (apps). We analyzed 510,229 user ratings and found that apps designed by patients, relatives, and healthcare professionals are rated significantly better by App Store customers than apps created by professional software companies. Apps developed by patients' relatives achieve significantly more downloads and generate on average three times higher revenues per year. The initial medical smartphone app developments in the early days of the Apple App Store were mainly triggered by healthcare professionals. The interview data shows the extensive medical knowledge of patients and their relatives, particularly those with chronic diseases. Terms of use: Documents inThe overall findings are in line with a current literature stream that indicates that patients are gaining more influence on their treatment, are better informed, and are taking more actions to increase their quality of life. Commercial healthcare companies should take advantage of this and should consider including patients and relatives into their product development.

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Section: Discussionsupporting

confidence: 88%

Are Patients and Relatives the Better Innovators? The Case of Medical Smartphone Applications

Goeldner

Herstatt

2016

SSRN Journal

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“…We hope that studies of self-management lead the management of chronic neurological diseases to a better path for the future [38][39].…”

Section: Discussionmentioning

confidence: 99%

Self-management in neurological disorders: Systematic review of the literature and potential interventions in multiple sclerosis care

Rae-Grant

Turner

Sloan

et al. 2011

JRRD

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Abstract-Our objective was to review the current body of evidence supporting the efficacy of self-management programs in individuals with multiple sclerosis (MS) and other chronic neurological conditions. We reviewed published literature using standardized search terms; examined self-management interventions in a variety of chronic neurological disorders, including MS; and classified studies using the evidence classification established by the American Academy of Neurology. We reviewed 527 abstracts, of which 39 met our inclusion criteria for evaluation. Of the 39 studies, 3 provided class I evidence assessing the efficacy of self-management interventions: a randomized controlled trial of a telephone counseling program for health promotion in MS, a home-based exercise program for reducing falls in people with Parkinson disease, and the comparison of a fitness center program versus a home-based exercise program for people with traumatic brain injury. The remaining studies provided additional support for self-management interventions with a lesser degree of methodologic rigor (class II, class III, or class IV evidence). We concluded that self-management strategies are applicable to chronic neurological diseases, but a need exists for more rigorous studies in this area. We provide recommendations for future intervention study methodologies with a specific emphasis on MS care.

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“…In contrast although the principles of concordance aim to improve medical outcomes via a partnership approach, it also acknowledges that the patient's informed decision to refuse treatment should not be viewed negatively (Wilson, 2001). Nevertheless, intelligent reasoned choices by individuals regarding the instructions they receive about treatment (World Health Organization, 2003) may be refuted by professionals, thus setting patients the near impossible task of being simultaneously self-reliant and compliant (Thorne et al, 2000). Whilst noncompliance is professionally defined, actions that may be viewed as non-compliant by a professional do not necessarily lead to poor health outcomes (Roberson, 1992).…”

Section: Self-care and Self-management In Long-term Conditionsmentioning

confidence: 99%

“…Whilst there is a growing acknowledgement within nursing literature that patient expertise within chronic illness not only should be promoted (Hughes, 2004) but also acknowledged (Fox, 2005, Wilson, 2002, research suggests that there is some resistance from nurses towards the notion of active self-managing patients (Henderson, 2003, Thorne et al, 2000. However, within the policy context of the expert patient and self-management there has been little previous research in the UK exploring nurses' responses towards active and informed patients.…”

Section: Nurses and Self-managementmentioning

confidence: 99%

“…Whilst considerable work has been undertaken to evaluate patient outcomes on the EPP and similar courses in the UK (Barlow et al, 1998, Barlow et al, 1999, Kennedy et al, 2004, there has been a corresponding lack of research on the professional response to such programmes, and yet work from elsewhere indicates that this may be an issue (Bodenheimer et al, 2002, Paterson, 2001, Thorne et al, 2000. The aims of the study were therefore to explore how patient expertise is viewed, interpreted, defined and experienced by both patients and health professionals, to analyse how patient expertise is promoted and enabled through the self-management process, and to uncover the mechanisms that enhance or impede the development of patient expertise.…”

Section: The Studymentioning

confidence: 99%

See 1 more Smart Citation

Nurses’ responses to expert patients: The rhetoric and reality of self-management in long-term conditions: A grounded theory study

Wilson

Kendall

Brooks

2006

International Journal of Nursing Studies

104

113

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Attitudes toward patient expertise in chronic illness

Cited by 142 publications

References 32 publications

Are Patients and Relatives the Better Innovators? The Case of Medical Smartphone Applications

Are Patients and Relatives the Better Innovators? The Case of Medical Smartphone Applications

Self-management in neurological disorders: Systematic review of the literature and potential interventions in multiple sclerosis care

Nurses’ responses to expert patients: The rhetoric and reality of self-management in long-term conditions: A grounded theory study

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