The Experiences of People with Multiple Sclerosis on Patient-Generated Data Through Digital Tools

Virpi Jylhä; Niina Reinikainen; Milla Rosenlund; Hanna Kuusisto

doi:10.3233/SHTI250513

The Experiences of People with Multiple Sclerosis on Patient-Generated Data Through Digital Tools

Virpi Jylhä
, Niina Reinikainen
, Milla Rosenlund
, Hanna Kuusisto

NIKU, Neuroalat

Tutkimustuotos: Konferenssiartikkeli › Tieteellinen › vertaisarvioitu

25 Lataukset (Pure)

Abstrakti

Digital services enable the real-time recording and transmission of patient-generated health data (PGHD) to health care professionals. This study aimed to understand the experiences of people with multiple sclerosis (pwMS) regarding PGHD and digital tools in decision-making. Additionally, we sought to identify which elements of PGHD they find meaningful to share with health professionals. One focus group interview was conducted in June 2023 with five pwMS. Data were analysed using a deductive content analysis method. The participants were proactive in sharing PGHD with healthcare professionals and hoped that this digitally generated information would provide more targeted guidance for disease management and treatment decision-making. Particularly, they wanted to influence the choice of rehabilitation methods. However, the possibilities to utilise patient-generated health data varied across healthcare.

Alkuperäiskieli	Englanti
Otsikko	Intelligent Health Systems – From Technology to Data and Knowledge
Alaotsikko	Proceedings of MIE 2025
Toimittajat	Elisavet Andrikopoulou, Parisis Gallos, Theodoros N. Arvanitis, Rosalynn Austin, Arriel Benis, Ronald Cornet, Panagiotis Chatzistergos, Alexander Dejaco, Linda Dusseljee-Peute, Alaa Mohasseb, Pantelis Natsiavas, Haythem Nakkas, Philip Scott
Kustantaja	IOS Press
Sivut	954-958
Sivumäärä	5
ISBN (elektroninen)	978-1-64368-596-0
DOI - pysyväislinkit	https://doi.org/10.3233/SHTI250513
Tila	Julkaistu - 15 toukok. 2025
OKM-julkaisutyyppi	A4 Artikkeli konferenssijulkaisussa
Tapahtuma	Medical Informatics Europe - Glasgow, Iso-Britannia Kesto: 19 toukok. 2025 → 21 toukok. 2025 Konferenssinumero: 35th

Julkaisusarja

Nimi	Studies in health technology and informatics
Vuosikerta	327
ISSN (painettu)	0926-9630

Conference

Conference	Medical Informatics Europe
Lyhennettä	MIE
Maa/Alue	Iso-Britannia
Kaupunki	Glasgow
Ajanjakso	19/05/25 → 21/05/25

Julkaisufoorumi-taso

Jufo-taso 1

!!ASJC Scopus subject areas

Biomedical Engineering
Health Informatics
Health Information Management

Pääsy asiakirjaan

10.3233/SHTI250513Lisenssi: CC BY-NC

SHTI-327-SHTI250513Final published version, 302 KBLisenssi: CC BY-NC

https://urn.fi/URN:NBN:fi:tuni-202506066857Lisenssi: CC BY-NC

Siteeraa tätä

Jylhä, V., Reinikainen, N., Rosenlund, M., & Kuusisto, H. (2025). The Experiences of People with Multiple Sclerosis on Patient-Generated Data Through Digital Tools. teoksessa E. Andrikopoulou, P. Gallos, T. N. Arvanitis, R. Austin, A. Benis, R. Cornet, P. Chatzistergos, A. Dejaco, L. Dusseljee-Peute, A. Mohasseb, P. Natsiavas, H. Nakkas, & P. Scott (Toimittajat), Intelligent Health Systems – From Technology to Data and Knowledge: Proceedings of MIE 2025 (Sivut 954-958). (Studies in health technology and informatics; Vuosikerta 327). IOS Press. https://doi.org/10.3233/SHTI250513

Jylhä, Virpi ; Reinikainen, Niina ; Rosenlund, Milla et al. / The Experiences of People with Multiple Sclerosis on Patient-Generated Data Through Digital Tools. Intelligent Health Systems – From Technology to Data and Knowledge: Proceedings of MIE 2025. Toimittaja / Elisavet Andrikopoulou ; Parisis Gallos ; Theodoros N. Arvanitis ; Rosalynn Austin ; Arriel Benis ; Ronald Cornet ; Panagiotis Chatzistergos ; Alexander Dejaco ; Linda Dusseljee-Peute ; Alaa Mohasseb ; Pantelis Natsiavas ; Haythem Nakkas ; Philip Scott. IOS Press, 2025. Sivut 954-958 (Studies in health technology and informatics).

@inproceedings{fbe08793da4440ff9a448eba4b9bbec4,

title = "The Experiences of People with Multiple Sclerosis on Patient-Generated Data Through Digital Tools",

abstract = "Digital services enable the real-time recording and transmission of patient-generated health data (PGHD) to health care professionals. This study aimed to understand the experiences of people with multiple sclerosis (pwMS) regarding PGHD and digital tools in decision-making. Additionally, we sought to identify which elements of PGHD they find meaningful to share with health professionals. One focus group interview was conducted in June 2023 with five pwMS. Data were analysed using a deductive content analysis method. The participants were proactive in sharing PGHD with healthcare professionals and hoped that this digitally generated information would provide more targeted guidance for disease management and treatment decision-making. Particularly, they wanted to influence the choice of rehabilitation methods. However, the possibilities to utilise patient-generated health data varied across healthcare.",

keywords = "decision making, digitalisation, focus group, multiple sclerosis, patient-generated health data",

author = "Virpi Jylh{\"a} and Niina Reinikainen and Milla Rosenlund and Hanna Kuusisto",

year = "2025",

month = may,

day = "15",

doi = "10.3233/SHTI250513",

language = "English",

series = "Studies in health technology and informatics",

publisher = "IOS Press",

pages = "954--958",

editor = "Andrikopoulou, \{Elisavet \} and Gallos, \{Parisis \} and Arvanitis, \{Theodoros N. \} and Austin, \{Rosalynn \} and Benis, \{Arriel \} and Cornet, \{Ronald \} and Chatzistergos, \{Panagiotis \} and Dejaco, \{Alexander \} and Dusseljee-Peute, \{Linda \} and Mohasseb, \{Alaa \} and Natsiavas, \{Pantelis \} and Nakkas, \{Haythem \} and Scott, \{Philip \}",

booktitle = "Intelligent Health Systems – From Technology to Data and Knowledge",

address = "Netherlands",

note = "Medical Informatics Europe, MIE ; Conference date: 19-05-2025 Through 21-05-2025",

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Jylhä, V, Reinikainen, N, Rosenlund, M & Kuusisto, H 2025, The Experiences of People with Multiple Sclerosis on Patient-Generated Data Through Digital Tools. julkaisussa E Andrikopoulou, P Gallos, TN Arvanitis, R Austin, A Benis, R Cornet, P Chatzistergos, A Dejaco, L Dusseljee-Peute, A Mohasseb, P Natsiavas, H Nakkas & P Scott (toim), Intelligent Health Systems – From Technology to Data and Knowledge: Proceedings of MIE 2025. Studies in health technology and informatics, Vuosikerta 327, IOS Press, Sivut 954-958, Medical Informatics Europe, Glasgow, Iso-Britannia, 19/05/25. https://doi.org/10.3233/SHTI250513

The Experiences of People with Multiple Sclerosis on Patient-Generated Data Through Digital Tools. / Jylhä, Virpi; Reinikainen, Niina; Rosenlund, Milla et al.
Intelligent Health Systems – From Technology to Data and Knowledge: Proceedings of MIE 2025. toim. / Elisavet Andrikopoulou; Parisis Gallos; Theodoros N. Arvanitis; Rosalynn Austin; Arriel Benis; Ronald Cornet; Panagiotis Chatzistergos; Alexander Dejaco; Linda Dusseljee-Peute; Alaa Mohasseb; Pantelis Natsiavas; Haythem Nakkas; Philip Scott. IOS Press, 2025. s. 954-958 (Studies in health technology and informatics; Vuosikerta 327).

Tutkimustuotos: Konferenssiartikkeli › Tieteellinen › vertaisarvioitu

TY - GEN

T1 - The Experiences of People with Multiple Sclerosis on Patient-Generated Data Through Digital Tools

AU - Jylhä, Virpi

AU - Reinikainen, Niina

AU - Rosenlund, Milla

AU - Kuusisto, Hanna

N1 - Conference code: 35th

PY - 2025/5/15

Y1 - 2025/5/15

N2 - Digital services enable the real-time recording and transmission of patient-generated health data (PGHD) to health care professionals. This study aimed to understand the experiences of people with multiple sclerosis (pwMS) regarding PGHD and digital tools in decision-making. Additionally, we sought to identify which elements of PGHD they find meaningful to share with health professionals. One focus group interview was conducted in June 2023 with five pwMS. Data were analysed using a deductive content analysis method. The participants were proactive in sharing PGHD with healthcare professionals and hoped that this digitally generated information would provide more targeted guidance for disease management and treatment decision-making. Particularly, they wanted to influence the choice of rehabilitation methods. However, the possibilities to utilise patient-generated health data varied across healthcare.

AB - Digital services enable the real-time recording and transmission of patient-generated health data (PGHD) to health care professionals. This study aimed to understand the experiences of people with multiple sclerosis (pwMS) regarding PGHD and digital tools in decision-making. Additionally, we sought to identify which elements of PGHD they find meaningful to share with health professionals. One focus group interview was conducted in June 2023 with five pwMS. Data were analysed using a deductive content analysis method. The participants were proactive in sharing PGHD with healthcare professionals and hoped that this digitally generated information would provide more targeted guidance for disease management and treatment decision-making. Particularly, they wanted to influence the choice of rehabilitation methods. However, the possibilities to utilise patient-generated health data varied across healthcare.

KW - decision making

KW - digitalisation

KW - focus group

KW - multiple sclerosis

KW - patient-generated health data

U2 - 10.3233/SHTI250513

DO - 10.3233/SHTI250513

M3 - Conference contribution

C2 - 40380620

AN - SCOPUS:105005816712

T3 - Studies in health technology and informatics

SP - 954

EP - 958

BT - Intelligent Health Systems – From Technology to Data and Knowledge

A2 - Andrikopoulou, Elisavet

A2 - Gallos, Parisis

A2 - Arvanitis, Theodoros N.

A2 - Austin, Rosalynn

A2 - Benis, Arriel

A2 - Cornet, Ronald

A2 - Chatzistergos, Panagiotis

A2 - Dejaco, Alexander

A2 - Dusseljee-Peute, Linda

A2 - Mohasseb, Alaa

A2 - Natsiavas, Pantelis

A2 - Nakkas, Haythem

A2 - Scott, Philip

PB - IOS Press

T2 - Medical Informatics Europe

Y2 - 19 May 2025 through 21 May 2025

ER -

Jylhä V, Reinikainen N, Rosenlund M, Kuusisto H. The Experiences of People with Multiple Sclerosis on Patient-Generated Data Through Digital Tools. julkaisussa Andrikopoulou E, Gallos P, Arvanitis TN, Austin R, Benis A, Cornet R, Chatzistergos P, Dejaco A, Dusseljee-Peute L, Mohasseb A, Natsiavas P, Nakkas H, Scott P, toimittajat, Intelligent Health Systems – From Technology to Data and Knowledge: Proceedings of MIE 2025. IOS Press. 2025. s. 954-958. (Studies in health technology and informatics). doi: 10.3233/SHTI250513

The Experiences of People with Multiple Sclerosis on Patient-Generated Data Through Digital Tools

Abstrakti

Julkaisusarja

Conference

Julkaisufoorumi-taso

!!ASJC Scopus subject areas

Pääsy asiakirjaan

Sormenjälki

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