Academic Journal
Views on sharing mental health data for research purposes: qualitative analysis of interviews with people with mental illness
| العنوان: | Views on sharing mental health data for research purposes: qualitative analysis of interviews with people with mental illness |
|---|---|
| المؤلفون: | Emily Watson, Sue Fletcher-Watson, Elizabeth Joy Kirkham |
| المصدر: | BMC Medical Ethics, Vol 24, Iss 1, Pp 1-12 (2023) |
| بيانات النشر: | BMC, 2023. |
| سنة النشر: | 2023 |
| المجموعة: | LCC:Medical philosophy. Medical ethics |
| مصطلحات موضوعية: | Mental health, Health data, Patient perspectives, Interview, Mental illness, Qualitative, Medical philosophy. Medical ethics, R723-726 |
| الوصف: | Abstract Background Improving the ways in which routinely-collected mental health data are shared could facilitate substantial advances in research and treatment. However, this process should only be undertaken in partnership with those who provide such data. Despite relatively widespread investigation of public perspectives on health data sharing more generally, there is a lack of research on the views of people with mental illness. Methods Twelve people with lived experience of mental illness took part in semi-structured interviews via online video software. Participants had experience of a broad range of mental health conditions including anxiety, depression, schizophrenia, eating disorders and addiction. Interview questions sought to establish how participants felt about the use of routinely-collected health data for research purposes, covering different types of health data, what health data should be used for, and any concerns around its use. Results Thematic analysis identified four overarching themes: benefits of sharing mental health data, concerns about sharing mental health data, safeguards, and data types. Participants were clear that health data sharing should facilitate improved scientific knowledge and better treatments for mental illness. There were concerns that data misuse could become another way in which individuals and society discriminate against people with mental illness, for example through insurance premiums or employment decisions. Despite this there was a generally positive attitude to sharing mental health data as long as appropriate safeguards were in place. Conclusions There was notable strength of feeling across participants that more should be done to reduce the suffering caused by mental illness, and that this could be partly facilitated by well-managed sharing of health data. The mental health research community could build on this generally positive attitude to mental health data sharing by following rigorous best practice tailored to the specific concerns of people with mental illness. |
| نوع الوثيقة: | article |
| وصف الملف: | electronic resource |
| اللغة: | English |
| تدمد: | 1472-6939 |
| Relation: | https://doaj.org/toc/1472-6939 |
| DOI: | 10.1186/s12910-023-00961-6 |
| URL الوصول: | https://doaj.org/article/f061806ccec34a2cbcdafcbe46c58ea7 |
| رقم الانضمام: | edsdoj.f061806ccec34a2cbcdafcbe46c58ea7 |
| قاعدة البيانات: | Directory of Open Access Journals |
Full Text Finder | ResultId |
1 |
|---|---|
| Header |
edsdoj Directory of Open Access Journals edsdoj.f061806ccec34a2cbcdafcbe46c58ea7 1008 3 Academic Journal academicJournal 1008.15667724609 |
| PLink |
https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&scope=site&db=edsdoj&AN=edsdoj.f061806ccec34a2cbcdafcbe46c58ea7&custid=s6537998&authtype=sso |
| FullText |
Array
(
[Availability] => 0
)
Array ( [0] => Array ( [Url] => https://doaj.org/article/f061806ccec34a2cbcdafcbe46c58ea7 [Name] => EDS - DOAJ [Category] => fullText [Text] => View record in DOAJ [MouseOverText] => View record in DOAJ ) [1] => Array ( [Url] => https://resolver.ebscohost.com/openurl?custid=s6537998&groupid=main&authtype=ip,guest&sid=EBSCO:edsdoj&genre=article&issn=14726939&ISBN=&volume=24&issue=1&date=20231101&spage=1&pages=1-12&title=BMC Medical Ethics&atitle=Views%20on%20sharing%20mental%20health%20data%20for%20research%20purposes%3A%20qualitative%20analysis%20of%20interviews%20with%20people%20with%20mental%20illness&id=DOI:10.1186/s12910-023-00961-6 [Name] => Full Text Finder (s6537998api) [Category] => fullText [Text] => Full Text Finder [Icon] => https://imageserver.ebscohost.com/branding/images/FTF.gif [MouseOverText] => Full Text Finder ) ) |
| Items |
Array
(
[Name] => Title
[Label] => Title
[Group] => Ti
[Data] => Views on sharing mental health data for research purposes: qualitative analysis of interviews with people with mental illness
)
Array ( [Name] => Author [Label] => Authors [Group] => Au [Data] => <searchLink fieldCode="AR" term="%22Emily+Watson%22">Emily Watson</searchLink><br /><searchLink fieldCode="AR" term="%22Sue+Fletcher-Watson%22">Sue Fletcher-Watson</searchLink><br /><searchLink fieldCode="AR" term="%22Elizabeth+Joy+Kirkham%22">Elizabeth Joy Kirkham</searchLink> ) Array ( [Name] => TitleSource [Label] => Source [Group] => Src [Data] => BMC Medical Ethics, Vol 24, Iss 1, Pp 1-12 (2023) ) Array ( [Name] => Publisher [Label] => Publisher Information [Group] => PubInfo [Data] => BMC, 2023. ) Array ( [Name] => DatePubCY [Label] => Publication Year [Group] => Date [Data] => 2023 ) Array ( [Name] => Subset [Label] => Collection [Group] => HoldingsInfo [Data] => LCC:Medical philosophy. Medical ethics ) Array ( [Name] => Subject [Label] => Subject Terms [Group] => Su [Data] => <searchLink fieldCode="DE" term="%22Mental+health%22">Mental health</searchLink><br /><searchLink fieldCode="DE" term="%22Health+data%22">Health data</searchLink><br /><searchLink fieldCode="DE" term="%22Patient+perspectives%22">Patient perspectives</searchLink><br /><searchLink fieldCode="DE" term="%22Interview%22">Interview</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+illness%22">Mental illness</searchLink><br /><searchLink fieldCode="DE" term="%22Qualitative%22">Qualitative</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+philosophy%2E+Medical+ethics%22">Medical philosophy. Medical ethics</searchLink><br /><searchLink fieldCode="DE" term="%22R723-726%22">R723-726</searchLink> ) Array ( [Name] => Abstract [Label] => Description [Group] => Ab [Data] => Abstract Background Improving the ways in which routinely-collected mental health data are shared could facilitate substantial advances in research and treatment. However, this process should only be undertaken in partnership with those who provide such data. Despite relatively widespread investigation of public perspectives on health data sharing more generally, there is a lack of research on the views of people with mental illness. Methods Twelve people with lived experience of mental illness took part in semi-structured interviews via online video software. Participants had experience of a broad range of mental health conditions including anxiety, depression, schizophrenia, eating disorders and addiction. Interview questions sought to establish how participants felt about the use of routinely-collected health data for research purposes, covering different types of health data, what health data should be used for, and any concerns around its use. Results Thematic analysis identified four overarching themes: benefits of sharing mental health data, concerns about sharing mental health data, safeguards, and data types. Participants were clear that health data sharing should facilitate improved scientific knowledge and better treatments for mental illness. There were concerns that data misuse could become another way in which individuals and society discriminate against people with mental illness, for example through insurance premiums or employment decisions. Despite this there was a generally positive attitude to sharing mental health data as long as appropriate safeguards were in place. Conclusions There was notable strength of feeling across participants that more should be done to reduce the suffering caused by mental illness, and that this could be partly facilitated by well-managed sharing of health data. The mental health research community could build on this generally positive attitude to mental health data sharing by following rigorous best practice tailored to the specific concerns of people with mental illness. ) Array ( [Name] => TypeDocument [Label] => Document Type [Group] => TypDoc [Data] => article ) Array ( [Name] => Format [Label] => File Description [Group] => SrcInfo [Data] => electronic resource ) Array ( [Name] => Language [Label] => Language [Group] => Lang [Data] => English ) Array ( [Name] => ISSN [Label] => ISSN [Group] => ISSN [Data] => 1472-6939 ) Array ( [Name] => NoteTitleSource [Label] => Relation [Group] => SrcInfo [Data] => https://doaj.org/toc/1472-6939 ) Array ( [Name] => DOI [Label] => DOI [Group] => ID [Data] => 10.1186/s12910-023-00961-6 ) Array ( [Name] => URL [Label] => Access URL [Group] => URL [Data] => <link linkTarget="URL" linkTerm="https://doaj.org/article/f061806ccec34a2cbcdafcbe46c58ea7" linkWindow="_blank">https://doaj.org/article/f061806ccec34a2cbcdafcbe46c58ea7</link> ) Array ( [Name] => AN [Label] => Accession Number [Group] => ID [Data] => edsdoj.f061806ccec34a2cbcdafcbe46c58ea7 ) |
| RecordInfo |
Array
(
[BibEntity] => Array
(
[Identifiers] => Array
(
[0] => Array
(
[Type] => doi
[Value] => 10.1186/s12910-023-00961-6
)
)
[Languages] => Array
(
[0] => Array
(
[Text] => English
)
)
[PhysicalDescription] => Array
(
[Pagination] => Array
(
[PageCount] => 12
[StartPage] => 1
)
)
[Subjects] => Array
(
[0] => Array
(
[SubjectFull] => Mental health
[Type] => general
)
[1] => Array
(
[SubjectFull] => Health data
[Type] => general
)
[2] => Array
(
[SubjectFull] => Patient perspectives
[Type] => general
)
[3] => Array
(
[SubjectFull] => Interview
[Type] => general
)
[4] => Array
(
[SubjectFull] => Mental illness
[Type] => general
)
[5] => Array
(
[SubjectFull] => Qualitative
[Type] => general
)
[6] => Array
(
[SubjectFull] => Medical philosophy. Medical ethics
[Type] => general
)
[7] => Array
(
[SubjectFull] => R723-726
[Type] => general
)
)
[Titles] => Array
(
[0] => Array
(
[TitleFull] => Views on sharing mental health data for research purposes: qualitative analysis of interviews with people with mental illness
[Type] => main
)
)
)
[BibRelationships] => Array
(
[HasContributorRelationships] => Array
(
[0] => Array
(
[PersonEntity] => Array
(
[Name] => Array
(
[NameFull] => Emily Watson
)
)
)
[1] => Array
(
[PersonEntity] => Array
(
[Name] => Array
(
[NameFull] => Sue Fletcher-Watson
)
)
)
[2] => Array
(
[PersonEntity] => Array
(
[Name] => Array
(
[NameFull] => Elizabeth Joy Kirkham
)
)
)
)
[IsPartOfRelationships] => Array
(
[0] => Array
(
[BibEntity] => Array
(
[Dates] => Array
(
[0] => Array
(
[D] => 01
[M] => 11
[Type] => published
[Y] => 2023
)
)
[Identifiers] => Array
(
[0] => Array
(
[Type] => issn-print
[Value] => 14726939
)
)
[Numbering] => Array
(
[0] => Array
(
[Type] => volume
[Value] => 24
)
[1] => Array
(
[Type] => issue
[Value] => 1
)
)
[Titles] => Array
(
[0] => Array
(
[TitleFull] => BMC Medical Ethics
[Type] => main
)
)
)
)
)
)
)
|
| IllustrationInfo |