Information Provision and Quality: A Pilot Study on Shared Decision-Making in Multiple Sclerosis

Hanna Kuusisto; Seija Apila; Kaija Saranto

doi:10.3233/SHTI220691

Information Provision and Quality: A Pilot Study on Shared Decision-Making in Multiple Sclerosis

Hanna Kuusisto^*
, Seija Apila
, Kaija Saranto

^*Corresponding author for this work

Research output: Chapter in Book/Report/Conference proceeding › Conference contribution › Scientific › peer-review

9 Citations (Scopus)

34 Downloads (Pure)

Abstract

The patient as an active participant in decision-making has become an important resource in health care. Shared decision-making (SDM) relies on the patient's easy access to reliable and evidence-based health care information as well as the availability of patient-generated data, such as values and preferences for the health care professional (HCP). The aim of the present pilot study was to evaluate what type of information people with multiple sclerosis (pwMS) use in the SDM process, and what are the sources of that information. A semi-structured web-based survey of SDM was conducted through the MS-society in Finland. The results are presented against the Ottawa Decision Support Framework. A total of 27 pwMS participated. We found that all the participants wished to be involved in the decision-making process, but that they seldom found the information provided by HCP to be helpful. Instead, they searched the internet and visited various conversation platforms in social media, such as Facebook groups, for additional information.

Original language	English
Title of host publication	Advances in Informatics, Management and Technology in Healthcare
Editors	John Mantas, Parisis Gallos, Emmanouil Zoulias, Arie Hasman, Mowafa S. Househ, Marianna Diomidous, Joseph Liaskos, Martha Charalampidou
Publisher	IOS Press
Pages	179-182
Number of pages	4
ISBN (Electronic)	978-1-64368-291-4
ISBN (Print)	978-1-64368-290-7
DOIs	https://doi.org/10.3233/SHTI220691
Publication status	Published - 2022
Publication type	A4 Article in conference proceedings
Event	International Conference on Informatics, Management, and Technology in Healthcare - Athens, Greece Duration: 1 Jul 2022 → 3 Jul 2022

Publication series

Name	Studies in Health Technology and Informatics
Volume	295
ISSN (Print)	0926-9630
ISSN (Electronic)	1879-8365

Conference

Conference	International Conference on Informatics, Management, and Technology in Healthcare
Country/Territory	Greece
City	Athens
Period	1/07/22 → 3/07/22

Funding

This research was funded by the Strategic Research Council (SRC) established within the Academy of Finland. Funding no. 335288

Keywords

multiple sclerosis
patient participation
shared decision-making

Publication forum classification

Publication forum level 1

ASJC Scopus subject areas

Biomedical Engineering
Health Informatics
Health Information Management

Access to Document

10.3233/SHTI220691Licence: CC BY-NC

SHTI-295-SHTI220691Final published version, 386 KBLicence: CC BY-NC

https://urn.fi/URN:NBN:fi:tuni-202209096973Licence: CC BY-NC

Cite this

Kuusisto, H., Apila, S., & Saranto, K. (2022). Information Provision and Quality: A Pilot Study on Shared Decision-Making in Multiple Sclerosis. In J. Mantas, P. Gallos, E. Zoulias, A. Hasman, M. S. Househ, M. Diomidous, J. Liaskos, & M. Charalampidou (Eds.), Advances in Informatics, Management and Technology in Healthcare (pp. 179-182). (Studies in Health Technology and Informatics; Vol. 295). IOS Press. https://doi.org/10.3233/SHTI220691

Kuusisto, Hanna ; Apila, Seija ; Saranto, Kaija. / Information Provision and Quality : A Pilot Study on Shared Decision-Making in Multiple Sclerosis. Advances in Informatics, Management and Technology in Healthcare. editor / John Mantas ; Parisis Gallos ; Emmanouil Zoulias ; Arie Hasman ; Mowafa S. Househ ; Marianna Diomidous ; Joseph Liaskos ; Martha Charalampidou. IOS Press, 2022. pp. 179-182 (Studies in Health Technology and Informatics).

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title = "Information Provision and Quality: A Pilot Study on Shared Decision-Making in Multiple Sclerosis",

abstract = "The patient as an active participant in decision-making has become an important resource in health care. Shared decision-making (SDM) relies on the patient's easy access to reliable and evidence-based health care information as well as the availability of patient-generated data, such as values and preferences for the health care professional (HCP). The aim of the present pilot study was to evaluate what type of information people with multiple sclerosis (pwMS) use in the SDM process, and what are the sources of that information. A semi-structured web-based survey of SDM was conducted through the MS-society in Finland. The results are presented against the Ottawa Decision Support Framework. A total of 27 pwMS participated. We found that all the participants wished to be involved in the decision-making process, but that they seldom found the information provided by HCP to be helpful. Instead, they searched the internet and visited various conversation platforms in social media, such as Facebook groups, for additional information.",

keywords = "multiple sclerosis, patient participation, shared decision-making",

author = "Hanna Kuusisto and Seija Apila and Kaija Saranto",

note = "Funding Information: This research was funded by the Strategic Research Council (SRC) established within the Academy of Finland. Funding no. 335288 Publisher Copyright: {\textcopyright} 2022 The authors and IOS Press.; International Conference on Informatics, Management, and Technology in Healthcare ; Conference date: 01-07-2022 Through 03-07-2022",

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doi = "10.3233/SHTI220691",

language = "English",

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Kuusisto, H, Apila, S & Saranto, K 2022, Information Provision and Quality: A Pilot Study on Shared Decision-Making in Multiple Sclerosis. in J Mantas, P Gallos, E Zoulias, A Hasman, MS Househ, M Diomidous, J Liaskos & M Charalampidou (eds), Advances in Informatics, Management and Technology in Healthcare. Studies in Health Technology and Informatics, vol. 295, IOS Press, pp. 179-182, International Conference on Informatics, Management, and Technology in Healthcare, Athens, Greece, 1/07/22. https://doi.org/10.3233/SHTI220691

Information Provision and Quality: A Pilot Study on Shared Decision-Making in Multiple Sclerosis. / Kuusisto, Hanna; Apila, Seija; Saranto, Kaija.
Advances in Informatics, Management and Technology in Healthcare. ed. / John Mantas; Parisis Gallos; Emmanouil Zoulias; Arie Hasman; Mowafa S. Househ; Marianna Diomidous; Joseph Liaskos; Martha Charalampidou. IOS Press, 2022. p. 179-182 (Studies in Health Technology and Informatics; Vol. 295).

Research output: Chapter in Book/Report/Conference proceeding › Conference contribution › Scientific › peer-review

TY - GEN

T1 - Information Provision and Quality

T2 - International Conference on Informatics, Management, and Technology in Healthcare

AU - Kuusisto, Hanna

AU - Apila, Seija

AU - Saranto, Kaija

N1 - Funding Information: This research was funded by the Strategic Research Council (SRC) established within the Academy of Finland. Funding no. 335288 Publisher Copyright: © 2022 The authors and IOS Press.

PY - 2022

Y1 - 2022

N2 - The patient as an active participant in decision-making has become an important resource in health care. Shared decision-making (SDM) relies on the patient's easy access to reliable and evidence-based health care information as well as the availability of patient-generated data, such as values and preferences for the health care professional (HCP). The aim of the present pilot study was to evaluate what type of information people with multiple sclerosis (pwMS) use in the SDM process, and what are the sources of that information. A semi-structured web-based survey of SDM was conducted through the MS-society in Finland. The results are presented against the Ottawa Decision Support Framework. A total of 27 pwMS participated. We found that all the participants wished to be involved in the decision-making process, but that they seldom found the information provided by HCP to be helpful. Instead, they searched the internet and visited various conversation platforms in social media, such as Facebook groups, for additional information.

AB - The patient as an active participant in decision-making has become an important resource in health care. Shared decision-making (SDM) relies on the patient's easy access to reliable and evidence-based health care information as well as the availability of patient-generated data, such as values and preferences for the health care professional (HCP). The aim of the present pilot study was to evaluate what type of information people with multiple sclerosis (pwMS) use in the SDM process, and what are the sources of that information. A semi-structured web-based survey of SDM was conducted through the MS-society in Finland. The results are presented against the Ottawa Decision Support Framework. A total of 27 pwMS participated. We found that all the participants wished to be involved in the decision-making process, but that they seldom found the information provided by HCP to be helpful. Instead, they searched the internet and visited various conversation platforms in social media, such as Facebook groups, for additional information.

KW - multiple sclerosis

KW - patient participation

KW - shared decision-making

U2 - 10.3233/SHTI220691

DO - 10.3233/SHTI220691

M3 - Conference contribution

C2 - 35773837

AN - SCOPUS:85133298612

SN - 978-1-64368-290-7

T3 - Studies in Health Technology and Informatics

SP - 179

EP - 182

BT - Advances in Informatics, Management and Technology in Healthcare

A2 - Mantas, John

A2 - Gallos, Parisis

A2 - Zoulias, Emmanouil

A2 - Hasman, Arie

A2 - Househ, Mowafa S.

A2 - Diomidous, Marianna

A2 - Liaskos, Joseph

A2 - Charalampidou, Martha

PB - IOS Press

Y2 - 1 July 2022 through 3 July 2022

ER -

Kuusisto H, Apila S, Saranto K. Information Provision and Quality: A Pilot Study on Shared Decision-Making in Multiple Sclerosis. In Mantas J, Gallos P, Zoulias E, Hasman A, Househ MS, Diomidous M, Liaskos J, Charalampidou M, editors, Advances in Informatics, Management and Technology in Healthcare. IOS Press. 2022. p. 179-182. (Studies in Health Technology and Informatics). doi: 10.3233/SHTI220691

Information Provision and Quality: A Pilot Study on Shared Decision-Making in Multiple Sclerosis

Abstract

Publication series

Conference

Funding

Keywords

Publication forum classification

ASJC Scopus subject areas

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