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Article ; Online: A qualitative study to identify thematic areas for HIV related patient-reported outcome measures (PROM) and patient-reported experience measures (PREM).

Lohiniva, Anna-Leena / Isosomppi, Sanna / Pasanen, Sini / Sutinen, Jussi

Journal of patient-reported outcomes

2023 Volume 7, Issue 1, Page(s) 41

Abstract: Background: The use of patient-reported outcome measures (PROM) and patient-reported experience measures (PREM) provide health providers with valuable feedback on how to improve clinical care and patient outcomes. This paper describes a qualitative ... ...

Abstract	Background: The use of patient-reported outcome measures (PROM) and patient-reported experience measures (PREM) provide health providers with valuable feedback on how to improve clinical care and patient outcomes. This paper describes a qualitative study that was conducted to learn about factors influencing the well-being of people living with HIV (PLHIV) in Finland. The findings will be used to develop themes for HIV-specific PROM and PREM questions. Methods: PROMs and PREMs were developed by the Finnish Institute for Health (THL) as a part of a project to develop a national quality-of-care registry for HIV. The study aimed to identify issues and concerns among people living with HIV (PLHIV) that influence their well-being (PROMs) and their experiences in the healthcare system (PREMs). The data were collected through face-to-face in-depth interviews and focus group discussions based on open-ended and semi-structured questions. The data were analyzed using thematic analysis. Results: The assessment identified the following PROMs of concern: psychological well-being, concerns about stigma, physical health, social well-being, sexual well-being, medication uptake, managing other medications with antiretrovirals (ARVs), and growing old. The assessment identified the following PREMs: helping patients understand their own health status, proving an opportunity for patients to discuss physical health, psychological and sexual well-being, supporting the uptake of ARVs, assisting patients with medication use, showing compassion towards patients, and empowering patients against stigma. Conclusion: These findings of the study can be used to develop domain-specific PROM and PREM questions for the national HIV quality care register.
MeSH term(s)	Humans ; Qualitative Research ; Focus Groups ; Delivery of Health Care ; Anti-Retroviral Agents ; Patient Reported Outcome Measures ; HIV Infections/psychology
Chemical Substances	Anti-Retroviral Agents
Language	English
Publishing date	2023-05-01
Publishing country	Germany
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ISSN	2509-8020
ISSN (online)	2509-8020
DOI	10.1186/s41687-023-00582-y
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Exploring Political Mistrust in Pandemic Risk Communication: Mixed-Method Study Using Social Media Data Analysis.

Unlu, Ali / Truong, Sophie / Tammi, Tuukka / Lohiniva, Anna-Leena

Journal of medical Internet research

2023 Volume 25, Page(s) e50199

Abstract: Background: This research extends prior studies by the Finnish Institute for Health and Welfare on pandemic-related risk perception, concentrating on the role of trust in health authorities and its impact on public health outcomes.: Objective: The ... ...

Abstract	Background: This research extends prior studies by the Finnish Institute for Health and Welfare on pandemic-related risk perception, concentrating on the role of trust in health authorities and its impact on public health outcomes. Objective: The paper aims to investigate variations in trust levels over time and across social media platforms, as well as to further explore 12 subcategories of political mistrust. It seeks to understand the dynamics of political trust, including mistrust accumulation, fluctuations over time, and changes in topic relevance. Additionally, the study aims to compare qualitative research findings with those obtained through computational methods. Methods: Data were gathered from a large-scale data set consisting of 13,629 Twitter and Facebook posts from 2020 to 2023 related to COVID-19. For analysis, a fine-tuned FinBERT model with an 80% accuracy rate was used for predicting political mistrust. The BERTopic model was also used for superior topic modeling performance. Results: Our preliminary analysis identifies 43 mistrust-related topics categorized into 9 major themes. The most salient topics include COVID-19 mortality, coping strategies, polymerase chain reaction testing, and vaccine efficacy. Discourse related to mistrust in authority is associated with perceptions of disease severity, willingness to adopt health measures, and information-seeking behavior. Our findings highlight that the distinct user engagement mechanisms and platform features of Facebook and Twitter contributed to varying patterns of mistrust and susceptibility to misinformation during the pandemic. Conclusions: The study highlights the effectiveness of computational methods like natural language processing in managing large-scale engagement and misinformation. It underscores the critical role of trust in health authorities for effective risk communication and public compliance. The findings also emphasize the necessity for transparent communication from authorities, concluding that a holistic approach to public health communication is integral for managing health crises effectively.
MeSH term(s)	Humans ; Social Media ; Pandemics ; Information Seeking Behavior ; COVID-19/prevention & control ; Data Analysis
Language	English
Publishing date	2023-10-20
Publishing country	Canada
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2028830-X
ISSN	1438-8871 ; 1438-8871
ISSN (online)	1438-8871
ISSN	1438-8871
DOI	10.2196/50199
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: A qualitative study to identify thematic areas for HIV related patient-reported outcome measures (PROM) and patient-reported experience measures (PREM)

Anna-Leena Lohiniva / Sanna Isosomppi / Sini Pasanen / Jussi Sutinen

Journal of Patient-Reported Outcomes, Vol 7, Iss 1, Pp 1-

2023 Volume 10

Abstract: Abstract Background The use of patient-reported outcome measures (PROM) and patient-reported experience measures (PREM) provide health providers with valuable feedback on how to improve clinical care and patient outcomes. This paper describes a ... ...

Abstract	Abstract Background The use of patient-reported outcome measures (PROM) and patient-reported experience measures (PREM) provide health providers with valuable feedback on how to improve clinical care and patient outcomes. This paper describes a qualitative study that was conducted to learn about factors influencing the well-being of people living with HIV (PLHIV) in Finland. The findings will be used to develop themes for HIV-specific PROM and PREM questions. Methods PROMs and PREMs were developed by the Finnish Institute for Health (THL) as a part of a project to develop a national quality-of-care registry for HIV. The study aimed to identify issues and concerns among people living with HIV (PLHIV) that influence their well-being (PROMs) and their experiences in the healthcare system (PREMs). The data were collected through face-to-face in-depth interviews and focus group discussions based on open-ended and semi-structured questions. The data were analyzed using thematic analysis. Results The assessment identified the following PROMs of concern: psychological well-being, concerns about stigma, physical health, social well-being, sexual well-being, medication uptake, managing other medications with antiretrovirals (ARVs), and growing old. The assessment identified the following PREMs: helping patients understand their own health status, proving an opportunity for patients to discuss physical health, psychological and sexual well-being, supporting the uptake of ARVs, assisting patients with medication use, showing compassion towards patients, and empowering patients against stigma. Conclusion These findings of the study can be used to develop domain-specific PROM and PREM questions for the national HIV quality care register.
Keywords	HIV ; Patient-centered care ; PROM ; PREM ; Public aspects of medicine ; RA1-1270
Subject code	360
Language	English
Publishing date	2023-05-01T00:00:00Z
Publisher	SpringerOpen
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Exploring Political Mistrust in Pandemic Risk Communication

Ali Unlu / Sophie Truong / Tuukka Tammi / Anna-Leena Lohiniva

Journal of Medical Internet Research, Vol 25, p e

Mixed-Method Study Using Social Media Data Analysis

2023 Volume 50199

Abstract: BackgroundThis research extends prior studies by the Finnish Institute for Health and Welfare on pandemic-related risk perception, concentrating on the role of trust in health authorities and its impact on public health outcomes. ObjectiveThe paper aims ... ...

Abstract	BackgroundThis research extends prior studies by the Finnish Institute for Health and Welfare on pandemic-related risk perception, concentrating on the role of trust in health authorities and its impact on public health outcomes. ObjectiveThe paper aims to investigate variations in trust levels over time and across social media platforms, as well as to further explore 12 subcategories of political mistrust. It seeks to understand the dynamics of political trust, including mistrust accumulation, fluctuations over time, and changes in topic relevance. Additionally, the study aims to compare qualitative research findings with those obtained through computational methods. MethodsData were gathered from a large-scale data set consisting of 13,629 Twitter and Facebook posts from 2020 to 2023 related to COVID-19. For analysis, a fine-tuned FinBERT model with an 80% accuracy rate was used for predicting political mistrust. The BERTopic model was also used for superior topic modeling performance. ResultsOur preliminary analysis identifies 43 mistrust-related topics categorized into 9 major themes. The most salient topics include COVID-19 mortality, coping strategies, polymerase chain reaction testing, and vaccine efficacy. Discourse related to mistrust in authority is associated with perceptions of disease severity, willingness to adopt health measures, and information-seeking behavior. Our findings highlight that the distinct user engagement mechanisms and platform features of Facebook and Twitter contributed to varying patterns of mistrust and susceptibility to misinformation during the pandemic. ConclusionsThe study highlights the effectiveness of computational methods like natural language processing in managing large-scale engagement and misinformation. It underscores the critical role of trust in health authorities for effective risk communication and public compliance. The findings also emphasize the necessity for transparent communication from authorities, concluding that a holistic approach to public health ...
Keywords	Computer applications to medicine. Medical informatics ; R858-859.7 ; Public aspects of medicine ; RA1-1270
Subject code	360
Language	English
Publishing date	2023-10-01T00:00:00Z
Publisher	JMIR Publications
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Identifying factors influencing COVID-19 vaccine uptake in Finland - a qualitative study using social media data.

Lohiniva, Anna-Leena / Pensola, Annika / Hyökki, Suvi / Sivelä, Jonas / Härmä, Vuokko / Tammi, Tuukka

Frontiers in public health

2023 Volume 11, Page(s) 1138800

Abstract: Introduction: Vaccine demand creation requires understanding what is driving the uptake of the vaccine. 24 Qualitative research methods are paramount to gaining a localized understanding of behavioral 25 drivers and barriers to vaccine uptake, but they ... ...

Abstract	Introduction: Vaccine demand creation requires understanding what is driving the uptake of the vaccine. 24 Qualitative research methods are paramount to gaining a localized understanding of behavioral 25 drivers and barriers to vaccine uptake, but they are often underutilized. Methods: This is a qualitative study that 26 used public comments on the Facebook and Twitter posts of the Finnish Institute for Health and 27 Welfare (THL) as data sources to identify behavioral drivers for COVID-19 vaccine uptake in 28 Finland. The participatory data analysis utilized thematic analysis and the Theoretical Domains 29 Framework (TDF). NVIVO was used to assist in the coding process. Results: The greatest number of FB and 30 Twitter comments were linked with six TDF domains: knowledge, environmental context and 31 resources, beliefs in consequences, beliefs in capabilities, social and professional role, and social 32 influences. The domains included 15 themes that were interlinked. The knowledge domain 33 overlapped with all other domains. Discussion: By using public discourse on Facebook and Twitter, and rapid 34 qualitative data analysis methods within a behavioral insight framework, this study adds to the 35 emerging knowledge about behavioral drivers of COVID-19 vaccines that can be used by public 36 health experts to enhance the uptake of vaccines during future pandemics and epidemics.
MeSH term(s)	Humans ; COVID-19 Vaccines ; Social Media ; Finland ; COVID-19/prevention & control ; Qualitative Research ; Vaccines
Chemical Substances	COVID-19 Vaccines ; Vaccines
Language	English
Publishing date	2023-06-09
Publishing country	Switzerland
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2711781-9
ISSN	2296-2565 ; 2296-2565
ISSN (online)	2296-2565
ISSN	2296-2565
DOI	10.3389/fpubh.2023.1138800
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article: Trust and willingness towards COVID-19 vaccine uptake: a mixed-method study in Ghana, 2021.

Amo-Adjei, Joshua / Nurzhynska, Anastasiia / Essuman, Ruth / Lohiniva, Anna-Leena

Archives of public health = Archives belges de sante publique

2022 Volume 80, Issue 1, Page(s) 64

Abstract: Background: On the account of limited doses of COVID-19 available to the country, the Government of Ghana created a priority list of persons to target for its vaccination agenda. In this paper, we look at trust and how it informs willingness to take the ...

Abstract	Background: On the account of limited doses of COVID-19 available to the country, the Government of Ghana created a priority list of persons to target for its vaccination agenda. In this paper, we look at trust and how it informs willingness to take the COVID-19 vaccine among persons targeted for the first phase of COVID-19 vaccination program in Ghana. Methods: A sequential mixed-method investigation was conducted among the priority population - persons 60 years and above, frontline government functionaries, health workers, persons with underlying health conditions and, religious leaders and teachers. We sampled 415 respondents from the target population for a survey and 15 religious and traditional leaders from three cities; Accra, Cape Coast and Tamale for follow-up in-depth interviews based on the results of the survey data. Quantitative data is presented with descriptive proportions and multinomial logistic regression and thematic approach is applied to the interview data. Results: Trust and willingness to take the vaccine are high in this priority population. Trust in the effectiveness and safety of the vaccine, rather than socioeconomic characteristics of respondents better predicted acceptance. From interview narratives, mistrust in political actors - both local and foreign, believe in superior protection of God and seeming misunderstanding of vaccine development processes countermand acceptance. On the other hand, the professional influence of people in one's social networks, and past triumphs of vaccination programmes against concerning childhood diseases embed trust and acceptance. Conclusions: Attention ought to be given to trust enhancing triggers while strategic communication approaches are used to remove triggers of mistrust.
Language	English
Publishing date	2022-02-21
Publishing country	England
Document type	Journal Article
ZDB-ID	1117688-x
ISSN	2049-3258 ; 0778-7367 ; 0003-9578
ISSN (online)	2049-3258
ISSN	0778-7367 ; 0003-9578
DOI	10.1186/s13690-022-00827-0
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Identifying factors influencing COVID-19 vaccine uptake in Finland – a qualitative study using social media data

Anna-Leena Lohiniva / Annika Pensola / Suvi Hyökki / Jonas Sivelä / Vuokko Härmä / Tuukka Tammi

Frontiers in Public Health, Vol

2023 Volume 11

Abstract: IntroductionVaccine demand creation requires understanding what is driving the uptake of the vaccine. 24 Qualitative research methods are paramount to gaining a localized understanding of behavioral 25 drivers and barriers to vaccine uptake, but they are ...

Abstract	IntroductionVaccine demand creation requires understanding what is driving the uptake of the vaccine. 24 Qualitative research methods are paramount to gaining a localized understanding of behavioral 25 drivers and barriers to vaccine uptake, but they are often underutilized.MethodsThis is a qualitative study that 26 used public comments on the Facebook and Twitter posts of the Finnish Institute for Health and 27 Welfare (THL) as data sources to identify behavioral drivers for COVID-19 vaccine uptake in 28 Finland. The participatory data analysis utilized thematic analysis and the Theoretical Domains 29 Framework (TDF). NVIVO was used to assist in the coding process.ResultsThe greatest number of FB and 30 Twitter comments were linked with six TDF domains: knowledge, environmental context and 31 resources, beliefs in consequences, beliefs in capabilities, social and professional role, and social 32 influences. The domains included 15 themes that were interlinked. The knowledge domain 33 overlapped with all other domains.DiscussionBy using public discourse on Facebook and Twitter, and rapid 34 qualitative data analysis methods within a behavioral insight framework, this study adds to the 35 emerging knowledge about behavioral drivers of COVID-19 vaccines that can be used by public 36 health experts to enhance the uptake of vaccines during future pandemics and epidemics.
Keywords	COVID-19 vaccine ; vaccine hesitancy ; vaccine demand creation ; behavioral insights ; qualitative research ; social media 2 ; Public aspects of medicine ; RA1-1270
Language	English
Publishing date	2023-06-01T00:00:00Z
Publisher	Frontiers Media S.A.
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Social Listening to Enhance Access to Appropriate Pandemic Information Among Culturally Diverse Populations: Case Study From Finland.

Lohiniva, Anna-Leena / Sibenberg, Katja / Austero, Sara / Skogberg, Natalia

JMIR infodemiology

2022 Volume 2, Issue 2, Page(s) e38343

Abstract: Background: Social listening, the process of monitoring and analyzing conversations to inform communication activities, is an essential component of infodemic management. It helps inform context-specific communication strategies that are culturally ... ...

Abstract	Background: Social listening, the process of monitoring and analyzing conversations to inform communication activities, is an essential component of infodemic management. It helps inform context-specific communication strategies that are culturally acceptable and appropriate for various subpopulations. Social listening is based on the notion that target audiences themselves can best define their own information needs and messages. Objective: This study aimed to describe the development of systematic social listening training for crisis communication and community outreach during the COVID-19 pandemic through a series of web-based workshops and to report the experiences of the workshop participants implementing the projects. Methods: A multidisciplinary team of experts developed a series of web-based training sessions for individuals responsible for community outreach or communication among linguistically diverse populations. The participants had no previous training in systematic data collection or monitoring. This training aimed to provide participants with sufficient knowledge and skills to develop a social listening system based on their specific needs and available resources. The workshop design took into consideration the pandemic context and focused on qualitative data collection. Information on the experiences of the participants in the training was gathered based on participant feedback and their assignments and through in-depth interviews with each team. Results: A series of 6 web-based workshops was conducted between May and September 2021. The workshops followed a systematic approach to social listening and included listening to web-based and offline sources; rapid qualitative analysis and synthesis; and developing communication recommendations, messages, and products. Follow-up meetings were organized between the workshops during which participants could share their achievements and challenges. Approximately 67% (4/6) of the participating teams established social listening systems by the end of the training. The teams tailored the knowledge provided during the training to their specific needs. As a result, the social systems developed by the teams had slightly different structures, target audiences, and aims. All resulting social listening systems followed the taught key principles of systematic social listening to collect and analyze data and used these new insights for further development of communication strategies. Conclusions: This paper describes an infodemic management system and workflow based on qualitative inquiry and adapted to local priorities and resources. The implementation of these projects resulted in content development for targeted risk communication, addressing linguistically diverse populations. These systems can be adapted for future epidemics and pandemics.
Language	English
Publishing date	2022-07-08
Publishing country	Canada
Document type	Journal Article
ISSN	2564-1891
ISSN (online)	2564-1891
DOI	10.2196/38343
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Trust and willingness towards COVID-19 vaccine uptake

Joshua Amo-Adjei / Anastasiia Nurzhynska / Ruth Essuman / Anna-Leena Lohiniva

Archives of Public Health, Vol 80, Iss 1, Pp 1-

a mixed-method study in Ghana, 2021

2022 Volume 12

Abstract: Abstract Background On the account of limited doses of COVID-19 available to the country, the Government of Ghana created a priority list of persons to target for its vaccination agenda. In this paper, we look at trust and how it informs willingness to ... ...

Abstract	Abstract Background On the account of limited doses of COVID-19 available to the country, the Government of Ghana created a priority list of persons to target for its vaccination agenda. In this paper, we look at trust and how it informs willingness to take the COVID-19 vaccine among persons targeted for the first phase of COVID-19 vaccination program in Ghana. Methods A sequential mixed-method investigation was conducted among the priority population - persons 60 years and above, frontline government functionaries, health workers, persons with underlying health conditions and, religious leaders and teachers. We sampled 415 respondents from the target population for a survey and 15 religious and traditional leaders from three cities; Accra, Cape Coast and Tamale for follow-up in-depth interviews based on the results of the survey data. Quantitative data is presented with descriptive proportions and multinomial logistic regression and thematic approach is applied to the interview data. Results Trust and willingness to take the vaccine are high in this priority population. Trust in the effectiveness and safety of the vaccine, rather than socioeconomic characteristics of respondents better predicted acceptance. From interview narratives, mistrust in political actors - both local and foreign, believe in superior protection of God and seeming misunderstanding of vaccine development processes countermand acceptance. On the other hand, the professional influence of people in one’s social networks, and past triumphs of vaccination programmes against concerning childhood diseases embed trust and acceptance. Conclusions Attention ought to be given to trust enhancing triggers while strategic communication approaches are used to remove triggers of mistrust.
Keywords	Trust ; Vaccine uptake ; Willingness ; Ghana ; Public aspects of medicine ; RA1-1270
Subject code	320
Language	English
Publishing date	2022-02-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: COVID-19 risk perception framework of the public: an infodemic tool for future pandemics and epidemics.

Lohiniva, Anna-Leena / Pensola, Annika / Hyökki, Suvi / Sivelä, Jonas / Tammi, Tuukka

BMC public health

2022 Volume 22, Issue 1, Page(s) 2124

Abstract: Understanding the risk perceptions of the public is central for risk communications and infodemic management during emergency and preparedness planning as people's behavior depends on how they perceive the related risks. This qualitative study aimed to ... ...

Abstract	Understanding the risk perceptions of the public is central for risk communications and infodemic management during emergency and preparedness planning as people's behavior depends on how they perceive the related risks. This qualitative study aimed to identify and describe factors related to COVID-19 risk perceptions of the public in Finland and to make this information readily available to those who communicate with the public during crises. The study is part of a larger project exploring crisis narratives through a mixed-methods approach. The study was based on a dataset of over 10,000 comments on the Facebook and Twitter posts of the Finnish Institute of Health and Welfare (THL) between March-May 2021. The data were analyzed qualitatively using thematic analysis. The study identified concepts linked with the pandemic risk perception that included knowledge, perceptions, personal experiences, trust, attitudes, and cultural values. The findings resulted in a framework of risk perceptions that can be used as taxonomy and a set of key concepts and keywords in social listening to monitor risk perception during future epidemics and pandemics.
MeSH term(s)	Humans ; Pandemics ; COVID-19/epidemiology ; Infodemic ; Qualitative Research ; Perception
Language	English
Publishing date	2022-11-18
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2041338-5
ISSN	1471-2458 ; 1471-2458
ISSN (online)	1471-2458
ISSN	1471-2458
DOI	10.1186/s12889-022-14563-1
Database	MEDical Literature Analysis and Retrieval System OnLINE

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