Logotyp: till Uppsala universitets webbplats

uu.sePublikationer från Uppsala universitet
Ändra sökning
Avgränsa sökresultatet
1 - 24 av 24
RefereraExporteraLänk till träfflistan
Permanent länk
Referera
Referensformat
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Annat format
Fler format
Språk
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Annat språk
Fler språk
Utmatningsformat
  • html
  • text
  • asciidoc
  • rtf
Träffar per sida
  • 5
  • 10
  • 20
  • 50
  • 100
  • 250
Sortering
  • Standard (Relevans)
  • Författare A-Ö
  • Författare Ö-A
  • Titel A-Ö
  • Titel Ö-A
  • Publikationstyp A-Ö
  • Publikationstyp Ö-A
  • Äldst först
  • Nyast först
  • Skapad (Äldst först)
  • Skapad (Nyast först)
  • Senast uppdaterad (Äldst först)
  • Senast uppdaterad (Nyast först)
  • Disputationsdatum (tidigaste först)
  • Disputationsdatum (senaste först)
  • Standard (Relevans)
  • Författare A-Ö
  • Författare Ö-A
  • Titel A-Ö
  • Titel Ö-A
  • Publikationstyp A-Ö
  • Publikationstyp Ö-A
  • Äldst först
  • Nyast först
  • Skapad (Äldst först)
  • Skapad (Nyast först)
  • Senast uppdaterad (Äldst först)
  • Senast uppdaterad (Nyast först)
  • Disputationsdatum (tidigaste först)
  • Disputationsdatum (senaste först)
Markera
Maxantalet träffar du kan exportera från sökgränssnittet är 250. Vid större uttag använd dig av utsökningar.
  • 1. Biasiotto, Roberta
    et al.
    Viberg Johansson, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Alemu, Melaku Birhanu
    Romano, Virginia
    Bentzen, Heidi Beate
    Kaye, Jane
    Ancillotti, Mirko
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Blom, Johanna Maria Catharina
    Chassang, Gauthier
    Hallinan, Dara
    Jónsdóttir, Guðbjörg Andrea
    Monasterio Astobiza, Aníbal
    Rial-Sebbag, Emmanuelle
    Rodríguez-Arias, David
    Shah, Nisha
    Skovgaard, Lea
    Staunton, Ciara
    Tschigg, Katharina
    Veldwijk, Jorien
    Mascalzoni, Deborah
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Institute for Biomedicine (Affiliated Institute of the University of Lübeck), Eurac Research, Bolzano, Italy .
    Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.2023Ingår i: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, artikel-id e47066Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: With new technologies, health data can be collected in a variety of different clinical, research, and public health contexts, and then can be used for a range of new purposes. Establishing the public's views about digital health data sharing is essential for policy makers to develop effective harmonization initiatives for digital health data governance at the European level.

    OBJECTIVE: This study investigated public preferences for digital health data sharing.

    METHODS: A discrete choice experiment survey was administered to a sample of European residents in 12 European countries (Austria, Denmark, France, Germany, Iceland, Ireland, Italy, the Netherlands, Norway, Spain, Sweden, and the United Kingdom) from August 2020 to August 2021. Respondents answered whether hypothetical situations of data sharing were acceptable for them. Each hypothetical scenario was defined by 5 attributes ("data collector," "data user," "reason for data use," "information on data sharing and consent," and "availability of review process"), which had 3 to 4 attribute levels each. A latent class model was run across the whole data set and separately for different European regions (Northern, Central, and Southern Europe). Attribute relative importance was calculated for each latent class's pooled and regional data sets.

    RESULTS: A total of 5015 completed surveys were analyzed. In general, the most important attribute for respondents was the availability of information and consent during health data sharing. In the latent class model, 4 classes of preference patterns were identified. While respondents in 2 classes strongly expressed their preferences for data sharing with opposing positions, respondents in the other 2 classes preferred not to share their data, but attribute levels of the situation could have had an impact on their preferences. Respondents generally found the following to be the most acceptable: a national authority or academic research project as the data user; being informed and asked to consent; and a review process for data transfer and use, or transfer only. On the other hand, collection of their data by a technological company and data use for commercial communication were the least acceptable. There was preference heterogeneity across Europe and within European regions.

    CONCLUSIONS: This study showed the importance of transparency in data use and oversight of health-related data sharing for European respondents. Regional and intraregional preference heterogeneity for "data collector," "data user," "reason," "type of consent," and "review" calls for governance solutions that would grant data subjects the ability to control their digital health data being shared within different contexts. These results suggest that the use of data without consent will demand weighty and exceptional reasons. An interactive and dynamic informed consent model combined with oversight mechanisms may be a solution for policy initiatives aiming to harmonize health data use across Europe.

  • 2.
    Drevin, Jennifer
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Nyholm, Dag
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper, Neurologi.
    Widner, Håkan
    Skane Univ Hosp, Neurol Clin, S-22185 Lund, Sweden..
    Van Vliet, Trinette
    Skane Univ Hosp, Neurol Clin, S-22185 Lund, Sweden..
    Viberg Johansson, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Inst Future Studies, Hollandargatan 13, S-11136 Stockholm, Sweden..
    Jiltsova, Elena
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper, Neurologi.
    Hansson, Mats G.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study2022Ingår i: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 23, artikel-id 102Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Human embryonic stem cells (hESC) as a source for the development of advanced therapy medicinal products are considered for treatment of Parkinson's disease (PD). Research has shown promising results and opened an avenue of great importance for patients who currently lack a disease modifying therapy. The use of hESC has given rise to moral concerns and been the focus of often heated debates on the moral status of human embryos. Approval for marketing is still pending.

    Objective: To Investigate the perspectives and concerns of patients with PD, patients being the directly concerned stakeholders in the ethical discussion.

    Methods: Qualitative semi-structured interviews related to this new therapy in seventeen patients from two Swedish cities.

    Results: The participants expressed various interests related to the use of human embryos for development of medicinal therapies; however, overall, they were positive towards the use of hESC for treatment of PD. It was deemed important that the donating woman or couple made the choice to donate embryos voluntarily. Furthermore, there were concerns that the industry does not always prioritise the patient over profit; thus, transparency was seen as important.

    Ladda ner fulltext (pdf)
    FULLTEXT01
  • 3.
    Grauman, Åsa
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Viberg, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Falahee, Marie
    University of Birmingham.
    Veldwijk, Jorien
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Public perceptions of myocardial infarction: Do illness perceptions predict preferences for health check results2022Ingår i: Preventive Medicine Reports, ISSN 2211-3355, Vol. 26, s. 101683-101683, artikel-id 101683Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Illness perceptions are associated with attitudes towards preventive behaviors and are therefore crucial to consider in the context of prevention of cardiovascular diseases. We investigated illness perceptions of the public about myocardial infarction, and whether they predict public preferences for health check test results.

    A randomly selected sample (N = 423) of the Swedish public aged 40–70 completed an online-survey. It included the brief illness perception questionnaire, items assessing sociodemographic, lifestyle and health factors and a discrete choice experiment incorporating six attributes of health checks (written results, notification method, consultation time, waiting time, lifestyle recommendation and cost). Associations between illness perceptions and sociodemographic- and cardiovascular risk factors were analyzed using multivariate linear regression. Preference data were analyzed with a mixed multinomial logit model.

    Presence of smoking, hypertension, obesity and lack of physical activity were associated with weaker causal beliefs for the relevant risk factor, while presence of a high stress level was associated with stronger causal beliefs for stress. Low control predicted unwillingness to receive lifestyle recommendations. Attributing family history as the most important personal cause of MI predicted unwillingness to participate in health checks.

    Illness perceptions differed due to presence of risk factors, age, sex and health literacy. Furthermore, illness perceptions influenced preferences for health check test results and willingness to participate in health checks. Illness perceptions should therefore be addressed when designing health communication and preventive interventions such as health checks, and methods for promoting accurate illness perceptions should be developed.

    Ladda ner fulltext (pdf)
    fulltext
  • 4. Huls, Samare P. I.
    et al.
    Veldwijk, Jorien
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Department of Health Technology Assessment, Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands; Erasmus Choice Modelling Centre, Erasmus University Rotterdam, Rotterdam, The Netherlands.
    Swait, Joffre D.
    Viberg Johansson, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Department of New Technologies and the Human Future, The Institute for Future Studies, Stockholm, Sweden.
    Ancillotti, Mirko
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    de Bekker-Grob, Esther W.
    Preference Variation: Where Does Health Risk Attitude Come Into the Equation?2022Ingår i: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 25, nr 12, s. 2044-2052Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objectives

    Decisions about health often involve risk, and different decision makers interpret and value risk information differently. Furthermore, an individual’s attitude toward health-specific risks can contribute to variation in health preferences and behavior. This study aimed to determine whether and how health-risk attitude and heterogeneity of health preferences are related.

    Methods

    To study the association between health-risk attitude and preference heterogeneity, we selected 3 discrete choice experiment case studies in the health domain that included risk attributes and accounted for preference heterogeneity. Health-risk attitude was measured using the 13-item Health-Risk Attitude Scale (HRAS-13). We analyzed 2 types of heterogeneity via panel latent class analyses, namely, how health-risk attitude relates to (1) stochastic class allocation and (2) systematic preference heterogeneity.

    Results

    Our study did not find evidence that health-risk attitude as measured by the HRAS-13 distinguishes people between classes. Nevertheless, we did find evidence that the HRAS-13 can distinguish people’s preferences for risk attributes within classes. This phenomenon was more pronounced in the patient samples than in the general population sample. Moreover, we found that numeracy and health literacy did distinguish people between classes.

    Conclusions

    Modeling health-risk attitude as an individual characteristic underlying preference heterogeneity has the potential to improve model fit and model interpretations. Nevertheless, the results of this study highlight the need for further research into the association between health-risk attitude and preference heterogeneity beyond class membership, a different measure of health-risk attitude, and the communication of risks.

    Ladda ner fulltext (pdf)
    fulltext
  • 5.
    Jimenez-Moreno, Aura Cecilia
    et al.
    Wellcome Centre for Mitochondrial Research, Newcastle University, Newcastle-Upon-Tyne, NE2 4HH, UK; Patient Centered Research, Evidera, London, W6 8BJ, UK.
    Pinto, Cathy Anne
    Pharmacoepidemiology Department, Centre for Observational and Realworld Evidence, Merck & Co, Inc., Rahway, NJ, USA.
    Levitan, Bennett
    Department of Epidemiology, Janssen Research & Development, Titusville, NJ, USA.
    Whichello, Chiara
    Erasmus School of Health Policy & Management and Erasmus Choice Modelling Centre, Erasmus University Rotterdam, Rotterdam, The Netherlands.
    Dyer, Christine
    Wellcome Centre for Mitochondrial Research, Newcastle University, Newcastle-Upon-Tyne, NE2 4HH, UK.
    van Overbeeke, Eline
    Department of Clinical Pharmacology and Pharmacotherapy, University of Leuven, Leuven, Belgium.
    de Bekker-Grob, Esther
    Erasmus School of Health Policy & Management and Erasmus Choice Modelling Centre, Erasmus University Rotterdam, Rotterdam, The Netherlands.
    Smith, Ian
    Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.
    Huys, Isabelle
    Department of Clinical Pharmacology and Pharmacotherapy, University of Leuven, Leuven, Belgium.
    Viberg, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Adcock, Kate
    Muscular Dystrophy UK, London, UK.
    Bullok, Kristin
    Global Patient Safety Department, Eli Lilly & Co., Indianapolis, IN, 46205, USA.
    Soekhai, Vikas
    Erasmus School of Health Policy & Management and Erasmus Choice Modelling Centre, Erasmus University Rotterdam, Rotterdam, The Netherlands.
    Yuan, Zhong
    Department of Epidemiology, Janssen Research & Development, Titusville, NJ, USA.
    Lochmuller, Hans
    Brain and Mind Research Institute, University of Ottawa, Ottawa, Canada.
    de Wit, Ardine
    Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.
    Gorman, Gráinne S.
    Wellcome Centre for Mitochondrial Research, Newcastle University, Newcastle-Upon-Tyne, NE2 4HH, UK.
    A study protocol for quantifying patient preferences in neuromuscular disorders: a case study of the IMI PREFER Project [version 1; peer review: 1 approved]2020Ingår i: Wellcome Open Research, ISSN 2398-502X, Vol. 5, nr 253Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objectives: Patient preference studies are increasingly used to inform decision-making during the medical product lifecycle but are rarely used to inform early stages of drug development.  The primary aim of this study is to quantify treatment preferences of patients with neuromuscular disorders, which represent serious and debilitating conditions with limited or no treatment options available. Methods: This quantitative patient preferences study was designed as an online survey, with a cross-over design.  This study will target two different diseases from the neuromuscular disorders disease group, myotonic dystrophy type 1 (DM1) and mitochondrial myopathies (MM). Despite having different physio-pathological pathways both DM1 and MM manifest in a clinically similar manner and may benefit from similar treatment options.  The sample will be stratified into three subgroups: two patient groups differentiated by age of symptom onset and one caregivers group.   Each subgroup will be randomly assigned to complete two of three different preference elicitation methods at two different time points: Q-methodology survey, discrete choice experiment, and best-worst scaling type 2, allowing cross-comparisons of the results across each study time within participants and within elicitation methods. Additional variables such as sociodemographic, clinical and health literacy will be collected to enable analysis of potential heterogeneity. Ethics and Dissemination: This study protocol has undergone ethical review and approval by the Newcastle University R&D Ethics Committee (Ref: 15169/2018). All participants will be invited to give electronic informed consent to take part in the study prior accessing the online survey. All electronic data will be anonymised prior analysis. This study is part of the Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (IMI-PREFER) project, a public-private collaborative research project aiming to develop expert and evidence-based recommendations on how and when patient preferences can be assessed and used to inform medical product decision making.

    Ladda ner fulltext (pdf)
    fulltext
  • 6.
    Schölin Bywall, Karin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. School of Health, Care and Social Welfare, Division of Health and Welfare Technology, Mälardalen University, Västerås, Sweden.
    Drevin, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Groothuis-Oudshoorn, Catharina
    Veldwijk, Jorien
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands; Erasmus Choice Modelling Centre, Erasmus University Rotterdam, Rotterdam, The Netherlands.
    Nyholm, Dag
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper, Neurologi.
    Widner, Hakan
    van Vliet, Trinette
    Jiltsova, Elena
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper, Neurologi.
    Hansson, Mats
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Viberg Johansson, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. The Institute for Future Studies, Holländargatan 13, 111 36, Stockholm, Sweden.
    Patients accept therapy using embryonic stem cells for Parkinson's disease: a discrete choice experiment2023Ingår i: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 24, nr 1, artikel-id 83Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: New disease-modifying ways to treat Parkinson's disease (PD) may soon become a reality with intracerebral transplantation of cell products produced from human embryonic stem cells (hESCs). The aim of this study was to assess what factors influence preferences of patients with PD regarding stem-cell based therapies to treat PD in the future.

    Methods: Patients with PD were invited to complete a web-based discrete choice experiment to assess the importance of the following attributes: (i) type of treatment, (ii) aim of treatment, (iii) available knowledge of the different types of treatments, (iv) effect on symptoms, and (v) risk for severe side effects. Latent class conditional logistic regression models were used to determine preference estimates and heterogeneity in respondents' preferences.

    Results: A substantial difference in respondents' preferences was observed in three latent preference patterns (classes). "Effect on symptoms" was the most important attribute in class 1, closely followed by "type of treatment," with medications as preferred to other treatment alternatives. Effect on symptoms was also the most important attribute in class 2, with treatment with hESCs preferred over other treatment alternatives. Likewise for class 3, that mainly focused on "type of treatment" in the decision-making. Respondents' class membership was influenced by their experience in treatment, side effects, and advanced treatment therapy as well as religious beliefs.

    Conclusions: Most of the respondents would accept a treatment with products emanating from hESCs, regardless of views on the moral status of embryos. Preferences of patients with PD may provide guidance in clinical decision-making regarding treatments deriving from stem cells.

    Ladda ner fulltext (pdf)
    fulltext
  • 7.
    Schölin Bywall, Karin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Mälardalen Univ, Sch Hlth Care & Social Welf, Div Hlth & Welf Technol, Västerås, Sweden..
    Esbensen, Bente Appel
    Heidenvall, Marie
    Erlandsson, Inger
    Lason, Marta
    Hansson, Mats G.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Viberg Johansson, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Inst Future Studies, Stockholm, Sweden..
    Physical function and severe side effects matter most to patients with RA (< 5 years): a discrete choice experiment assessing preferences for personalized RA treatment2023Ingår i: BMC Rheumatology, E-ISSN 2520-1026, Vol. 7, artikel-id 17Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Aim

    Early assessment of patient preferences has the potential to support shared decisions in personalized precision medicine for patients with rheumatoid arthritis (RA). The aim of this study was to assess treatment preferences of patients with RA (< 5 years) with previous experience of inadequate response to first-line monotherapy.

    Method

    Patients were recruited (March–June 2021) via four clinics in Sweden. Potential respondents (N = 933) received an invitation to answer a digital survey. The survey included an introductory part, a discrete choice experiment (DCE) and demographic questions. Each respondent answered 11 hypothetical choice questions as part of the DCE. Patient preferences and preference heterogeneity were estimated using random parameter logit models and latent class analysis models.

    Results

    Patients (n = 182) assessed the most important treatment attributes out of physical functional capacity, psychosocial functional capacity, frequency of mild side effects and likelihood of severe side effects. In general, patients preferred a greater increase in functional capacity and decreased side effects. However, a substantial preference heterogeneity was identified with two underlying preference patterns. The most important attribute in the first pattern was the ‘likelihood of getting a severe side effect’. Physical functional capacity was the most important attribute in the second pattern.

    Conclusion

    Respondents focused their decision-making mainly on increasing their physical functional capacity or decreasing the likelihood of getting a severe side effect. These results are highly relevant from a clinical perspective to strengthen communication in shared decision making by assessing patients’ individual preferences for benefits and risks in treatment discussions.

    Ladda ner fulltext (pdf)
    fulltext
  • 8.
    Schölin Bywall, Karin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Esbensen, Bente Appel
    Lason, Marta
    Heidenvall, Marie
    Erlandsson, Inger
    Viberg, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Functional capacity vs side effects: treatment attributes to consider when individualising treatment for patients with rheumatoid arthritis2022Ingår i: Clinical Rheumatology, ISSN 0770-3198, E-ISSN 1434-9949, Vol. 41, nr 3, s. 695-704Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Introduction:

    Individualisation of rheumatoid arthritis (RA) treatment needs to take account of individual patients’ preferences to increase patient-centeredness in treatment decisions. The aim of this study was to identify patient-relevant treatment attributes to consider when individualising treatment for patients with RA.

    Method:

    Patients with RA in Sweden were invited to rank the most important treatment attributes in an online survey (April to May 2020). Semi-structured interviews were conducted (October to November 2020) to further identify and frame potential attributes for shared decision-making. The interviews were audio-recorded, transcribed and analysed using thematic framework analysis. Patient research partners and rheumatologists supported the selection and framing of the treatment attributes across the assessment.

    Results:

    The highest ranked attributes (N = 184) were improved functional capacity, reduced inflammation, reduced pain and fatigue and the risk of getting a severe side effect. The framework analysis revealed two overarching themes for further exploration: treatment goals and side effects. ‘Treatment goals’ emerged from functional capacity, revealing two dimensions: physical functional capacity and psychosocial functional capacity. ‘Side effects’ revealed that mild and severe side effects were the most important to discuss in shared decision-making.

    Conclusions:

    Functional capacity (physical and psychosocial) and potential side effects (mild and severe) are important treatment attributes to consider when individualising RA treatment. Future research should assess how patients with RA weigh benefits and risks against each other, in order to increase patient-centeredness early on the treatment trajectory.

    Ladda ner fulltext (pdf)
    fulltext
  • 9.
    Schölin Bywall, Karin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Viberg, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Institute for Futures Studies, Stockholm, Sweden.
    Erlandsson, Inger
    Swedish Rheumatism Association .
    Heidenvall, Marie
    Swedish Rheumatism Association .
    Lason, Marta
    Elsa Science.
    Appel Esbensen, Bente
    Department of Clinical Medicine, University of Copenhagen, Kobenhavn, Denmark; Copenhagen Center for Arthritis Research (COPECARE), Center for Rheumatology and Spine Diseases, Centre of Head and Orthopaedics, Rigshospitalet, Kobenhavn, Denmark.
    Making space for patients’ preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritis2022Ingår i: BMJ Open, E-ISSN 2044-6055, Vol. 12, nr 6, s. e058303-e058303Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objective: Precision medicine in rheumatoid arthritis (RA) creates new opportunities to involve patients in early identification of accurate indicators of health trajectories. The aim of this study was to explore patient perspectives on patient-centredness in precision medicine for RA treatment.

    Design: Semistructured interviews were conducted to explore patients’ perspectives on a new personalised approach to RA treatment. The interview guide was developed together with patient research partners and health care professionals.

    Setting: An invitation to the interviews was sent through a mobile application. The interviews were one-on-one, using an interview guide with open-ended questions. Interviews were conducted digitally (October 2020–February 2021) via Zoom or telephone, depending on each participant’s preferences.

    Participants: Patients with RA (N=12) were purposively recruited. Patients were eligible if they had an RA diagnosis, were aged 18–80 years, and understood and expressed themselves in Swedish. Participants and researchers did not know each other prior to the interviews.

    Results: Participants expressed desires and needs for patients to have an active role in precision medicine by making shared treatment decisions together with a healthcare professional. In order for that to work, patients need information on potential treatment options, an ability to express their preferences, an individual treatment plan and identification of personal treatment goals. Patients also identified two requirements of healthcare professional in precision medicine: a safe environment to express personal matters and two-way communication with healthcare professionals.

    Conclusion: Communication between patients and healthcare professionals needs to be more focused on patients’ individual treatment preferences and expressed needs, in order to increase patient-centredness in treatment decisions, so shared decision-making can become a reality. More research is needed to design multifaceted implementation strategies to support patients and healthcare professionals to increase patient-centredness throughout treatment personalisation.

    Ladda ner fulltext (pdf)
    fulltext
  • 10.
    Shah, N.
    et al.
    Centre for Health, Law and Emerging Technologies, Faculty of Law, University of Oxford, Oxford, UK.
    Viberg Johansson, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Haraldsdóttir, E.
    Social Science Research Institute, University of Iceland, Reykjavik, Iceland.
    Bentzen, H.B.
    Norwegian Research Center for Computers and Law, Faculty of Law, University of Oslo, Oslo, Norway.
    Coy, S.
    Centre for Health, Law and Emerging Technologies, Faculty of Law, University of Oxford, Oxford, UK.
    Mascalzoni, Deborah
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Institute for Biomedicine, EURAC Research, Bolzano, Italy.
    Jónsdóttir, G.A.
    Social Science Research Institute, University of Iceland, Reykjavik, Iceland.
    Kaye, J.
    Centre for Health, Law and Emerging Technologies, Faculty of Law, University of Oxford, Oxford, UK; Centre for Health, Law and Emerging Technologies, Melbourne Law School, University of Melbourne, Australia.
    Governing health data across changing contexts: A focus group study of citizen’s views in England, Iceland, and Sweden2021Ingår i: International Journal of Medical Informatics, ISSN 1386-5056, E-ISSN 1872-8243, Vol. 156, artikel-id 104623Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background

    The governance structures associated with health data are evolving in response to advances in digital technologies that enable new ways of capturing, using, and sharing different types of data. Increasingly, health data moves between different contexts such as from healthcare to research, or to commerce and marketing. Crossing these contextual boundaries has the potential to violate societal expectations about the appropriate use of health data and diminish public trust. Understanding citizens’ views on the acceptability of and preferences for data use in different contexts is essential for developing information governance policies in these new contexts.

    Methods

    Focus group design presenting data sharing scenarios in England, Iceland, and Sweden.

    Results

    Seventy-one participants were recruited. Participants supported the need for data to help understand the observable world, improve medical research, the quality of public services, and to benefit society. However, participants consistently identified the lack of information, transparency and control as barriers to trusting organisations to use data in a way that they considered appropriate. There was considerable support for fair and transparent data sharing practices where all parties benefitted.

    Conclusion

    Data governance policy should involve all stakeholders’ perspectives on an ongoing basis, to inform and implement changes to health data sharing practices that accord with stakeholder views. The Findings showed that (1) data should be used for ethical purposes even when there was commercial interest; (2) data subjects and/or public institutions that provide and share data should also receive benefits from the sharing of data; (3) third parties use of data requires greater transparency and accountability than currently exists, (4) there should be greater information provided to empower data subjects.

  • 11.
    Soekhai, Vikas
    et al.
    Erasmus Univ, Erasmus Choice Modelling Ctr, PO ?Box 1738, NL-3000 DR Rotterdam, Netherlands.;Erasmus Univ, Erasmus Sch Hlth Policy & Management, Rotterdam, Netherlands.;Erasmus MC, Dept Publ Hlth, Erasmus MC, Rotterdam, Netherlands..
    Donkers, Bas
    Erasmus Univ, Erasmus Choice Modelling Ctr, PO ?Box 1738, NL-3000 DR Rotterdam, Netherlands.;Erasmus Univ, Erasmus Sch Econ, Rotterdam, Netherlands..
    Viberg Johansson, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Inst Futures Studies, Stockholm, Sweden.
    Jimenez-Moreno, Cecilia
    Newcastle Univ, Wellcome Ctr Mitochondrial Res, Newcastle Upon Tyne, England.;Patient Ctr Res, Evidera, London, England..
    Pinto, Cathy Anne
    Merck & Co Inc, Pharmacoepidemiol, Kenilworth, NJ USA..
    de Wit, G. Ardine
    Univ Utrecht, Univ Med Ctr Utrecht, Juliusctr Healthsci & Primary Care, Utrecht, Netherlands..
    de Bekker-Grob, Esther
    Erasmus Univ, Erasmus Choice Modelling Ctr, PO ?Box 1738, NL-3000 DR Rotterdam, Netherlands.;Erasmus Univ, Erasmus Sch Hlth Policy & Management, Rotterdam, Netherlands..
    Comparing Outcomes of a Discrete Choice Experiment and Case 2 Best-Worst Scaling: An Application to Neuromuscular Disease Treatment2023Ingår i: Patient, ISSN 1178-1653, E-ISSN 1178-1661, Vol. 16, nr 3, s. 239-253Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background and Objectives

    Case 2 best-worst scaling (BWS-2) is an increasingly popular method to elicit patient preferences. Because BWS-2 potentially has a lower cognitive burden compared with discrete choice experiments, the aim of this study was to compare treatment preference weights and relative importance scores.

    Methods

    Patients with neuromuscular diseases completed an online survey at two different moments in time, completing one method per occasion. Patients were randomly assigned to either first a discrete choice experiment or BWS-2. Attributes included: muscle strength, energy endurance, balance, cognition, chance of blurry vision, and chance of liver damage. Multinomial logit was used to calculate overall relative importance scores and latent class logit was used to estimate heterogeneous preference weights and to calculate the relative importance scores of the attributes for each latent class.

    Results

    A total of 140 patients were included for analyses. Overall relative importance scores showed differences in attribute importance rankings between a discrete choice experiment and BWS-2. Latent class analyses indicated three latent classes for both methods, with a specific class in both the discrete choice experiment and BWS-2 in which (avoiding) liver damage was the most important attribute. Ex-post analyses showed that classes differed in sex, age, level of education, and disease status. The discrete choice experiment was easier to understand compared with BWS-2.

    Conclusions

    This study showed that using a discrete choice experiment and BWS-2 leads to different outcomes, both in preference weights as well as in relative importance scores, which might have been caused by the different framing of risks in BWS-2. However, a latent class analysis revealed similar latent classes between methods. Careful consideration about method selection is required, while keeping the specific decision context in mind and pilot testing the methods.

    Ladda ner fulltext (pdf)
    FULLTEXT01
  • 12.
    Veldwijk, J.
    et al.
    Erasmus Univ, Rotterdam, Netherlands..
    Viberg Johansson, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Donkers, B.
    Erasmus Univ, Rotterdam, Netherlands..
    de Bekker-Grob, E.
    Erasmus Univ, Rotterdam, Netherlands..
    Mimicking Real Life Decision-Making In Health: Allowing Respondents Time-To-Think In A Discrete Choice Experiment2017Ingår i: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 20, nr 9, s. A406-A406Artikel i tidskrift (Övrigt vetenskapligt)
  • 13.
    Veldwijk, Jorien
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Erasmus Univ, Erasmus Sch Hlth Policy & Management, Rotterdam, Netherlands.;Erasmus Univ, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands..
    Viberg Johansson, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Donkers, Bas
    Erasmus Univ, Erasmus Sch Econ, Rotterdam, Netherlands.;Erasmus Univ, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands..
    de Bekker-Grob, Esther W.
    Erasmus Univ, Erasmus Sch Hlth Policy & Management, Rotterdam, Netherlands.;Erasmus Univ, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands..
    Mimicking Real-Life Decision Making in Health: Allowing Respondents Time to Think in a Discrete Choice Experiment2020Ingår i: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 23, nr 7, s. 945-952Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objective: To empirically test the impact of allowing respondents time to think (TTT) about their choice options on the outcomes of a discrete choice experiments (DCE). Methods: In total, 613 participants of the Swedish CArdioPulmonary bioImage Study (SCAPIS) completed a DCE questionnaire that measured their preferences for receiving secondary findings of a genetic test. A Bayesian D-efficient design with 60 choice tasks divided over 4 questionnaires was used. Each choice task contained 2 scenarios with 4 attributes: type of disease, disease penetrance probability, preventive opportunities, and effectiveness of prevention. Respondents were randomly allocated to the TTT or no TTT (NTTT) sample. Latent class models (LCMs) were estimated to determine attribute-level values and their relative importance. In addition, choice certainty, attribute-level interpretation, choice consistency, and potential uptake rates were compared between samples. Results: In the TTT sample, 92% of the respondents (245 of 267) indicated they used the TTT period to (1) read the information they received (72%) and (2) discuss with their family (24%). In both samples, respondents were very certain about their choices. A 3-class LCM was fitted for both samples. Preference reversals were found for 3 of the 4 attributes in one class in the NTTT sample (34% class-membership probability). Relative importance scores of the attributes differed between the 2 samples, and significant scale effects indicating higher choice consistency in TTT sample were found. Conclusions: Offering respondents TTT influences decision making and preferences. Developers of future DCEs regarding complex health-related decisions are advised to consider this approach to enhance the validity of the elicited preferences.

  • 14.
    Viberg, Jennifer
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Inst Futures Studies, Stockholm, Sweden..
    Bentzen, Heidi Beate
    Univ Oslo, Fac Law, Norwegian Res Ctr Comp & Law, Oslo, Norway..
    Mascalzoni, Deborah
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Eurac Res, Inst Biomed, Bolzano, Italy..
    What ethical approaches are used by scientists when sharing health data?: An interview study2022Ingår i: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 23, nr 1, artikel-id 41Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background Health data-driven activities have become central in diverse fields (research, AI development, wearables, etc.), and new ethical challenges have arisen with regards to privacy, integrity, and appropriateness of use. To ensure the protection of individuals' fundamental rights and freedoms in a changing environment, including their right to the protection of personal data, we aim to identify the ethical approaches adopted by scientists during intensive data exploitation when collecting, using, or sharing peoples' health data. Methods Twelve scientists who were collecting, using, or sharing health data in different contexts in Sweden, were interviewed. We used systematic expert interviews to access these scientists' specialist knowledge, and analysed the interviews with thematic analysis. Phrases, sentences, or paragraphs through which ethical values and norms were expressed, were identified and coded. Codes that reflected similar concepts were grouped, subcategories were formulated, and categories were connected to traditional ethical approaches. Results Through several examples, the respondents expressed four different ethical approaches, which formed the main conceptual categories: consideration of consequences, respect for rights, procedural compliance, and being professional. Conclusions To a large extent, the scientists' ethical approaches were consistent with ethical and legal principles. Data sharing was considered important and worth pursuing, even though it is difficult. An awareness of the complex issues involved in data sharing was reflected from different perspectives, and the respondents commonly perceived a general lack of practical procedures that would by default ensure ethical and legally compliant data collection and sharing. We suggest that it is an opportune time to move on from policy discussions to practical technological ethics-by-design solutions that integrate these principles into practice.

    Ladda ner fulltext (pdf)
    FULLTEXT01
  • 15.
    Viberg, Jennifer
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Hansson, Mats G.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Langenskiöld, Sophie
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Hälsoekonomi.
    Segerdahl, Pär
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Historisk-filosofiska fakulteten, Centrum för genusvetenskap.
    Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks2015Ingår i: Ethics, Law and Governance of Biobanking: National, European and International Approaches / [ed] Mascalzoni, Deborah, Springer, 2015Kapitel i bok, del av antologi (Refereegranskat)
  • 16.
    Viberg, Jennifer
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Hansson, Mats G.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Langenskiöld, Sophie
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Hälsoekonomi.
    Segerdahl, Pär
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Incidental findings: the time is not yet ripe for a policy for biobanks2014Ingår i: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 22, nr 4, s. 437-441Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Incidental findings (IFs) are acknowledged to be among the most important ethical issues to consider in biobank research. Genome-wide association studies and disease-specific genetic research might reveal information about individual participants that are not related to the research purpose, but may be relevant to those participants' future health. In this article, we provide a synopsis of arguments for and against the disclosure of IFs in biobank research. We argue that arguments that do not distinguish between communications about pathogenic conditions and complex genetic risk for diseases fail, as preferences and decisions may be far more complex in the latter case. The principle of beneficence, for example, often supports the communication of incidentally discovered diseases, but if communication of risk is different, the beneficence of such communication is not equally evident. By conflating the latter form of communication with the former, the application of ethical principles to IFs in biobank research sometimes becomes too easy and frictionless. Current empirical surveys of people's desire to be informed about IFs do not provide sufficient guidance because they rely on the same notion of risk communication as a form of communication about actual health and disease. Differently designed empirical research and more reflection on biobank research and genetic risk information is required before ethical principles can be applied to support the adoption of a reasonable and comprehensive policy for handling IFs.

  • 17.
    Viberg, Jennifer
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Langenskiöld, Sophie
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper, Kardiologi. Karolinska Inst, Med Management Ctr, Dept Learning Informat Management & Eth, Stockholm, Sweden.
    Segerdahl, Pär
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Hansson, Mats G.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Hösterey, Ulrika Ugander
    Sahlgrens Univ Hosp, Dept Clin Pathol & Genet, Gothenburg, Sweden.
    Gummesson, Anders
    Sahlgrens Univ Hosp, Dept Clin Pathol & Genet, Gothenburg, Sweden.
    Veldwijk, Jorien
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Erasmus Univ, Erasmus Sch Hlth Policy & Management, Rotterdam, Netherlands; Erasmus Univ, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands.
    Research participants' preferences for receiving genetic risk information: a discrete choice experiment2019Ingår i: Genetics in Medicine, ISSN 1098-3600, E-ISSN 1530-0366, Vol. 21, nr 10, s. 2381-2389Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: This study aims to determine research participants’ preferences for receiving genetic risk information when participating in a scientific study that uses genome sequencing.

    Methods: A discrete choice experiment questionnaire was sent to 650 research participants (response rate 60.5%). Four attributes were selected for the questionnaire: type of disease, disease penetrance probability, preventive opportunity, and effectiveness of the preventive measure. Panel mixed logit models were used to determine attribute level estimates and the heterogeneity in preferences. Relative importance of the attribute and the predicted uptake for different information scenarios were calculated from the estimates. In addition, this study estimates predicted uptake for receiving genetic risk information in different scenarios.

    Results: All characteristics influenced research participants’ willingness to receive genetic risk information. The most important characteristic was the effectiveness of the preventive opportunity. Predicted uptake ranged between 28% and 98% depending on what preventive opportunities and levels of effectiveness were presented.

    Conclusion: Information about an effective preventive measure was most important for participants. They valued that attribute twice as much as the other attributes. Therefore, when there is an effective preventive measure, risk communication can be less concerned with the magnitude of the probability of developing disease.

     

  • 18.
    Viberg, Jennifer
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Segerdahl, Pär
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Hösterey Ugander, Ulrika
    Clinical Genetics, Sahlgrenska University Hospital.
    Hansson, Mats G.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Langenskiöld, Sophie
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Hälsoekonomi. Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet..
    Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research2018Ingår i: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 101, nr 3, s. 422-427Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objective

    It is well known that research participants want to receive genetic risk information that is about high risks, serious diseases and potential preventive measures. The aim of this study was to explore, by qualitative means, something less well known: how do healthy research participants themselves make sense of genetic risk information?

    Method

    A phenomenographic approach was chosen to explore research participants’ understanding and assessment of genetic risk. We conducted four focus-group (N = 16) interviews with participants in a research programme designed to identify biomarkers for cardiopulmonary disease.

    Results

    Among the research participants, we found four ways of understanding genetic risk: as a binary concept, as an explanation, as revealing who I am (knowledge of oneself) and as affecting life ahead.

    Conclusion

    Research participants tend to understand genetic risk as a binary concept. This does not necessarily imply a misunderstanding of, or an irrational approach to, genetic risk. Rather, it may have a heuristic function in decision-making.

    Practical implications

    Risk communication may be enhanced by tailoring the communication to the participants’ own lay conceptions. For example, researchers and counselors should address risk in binary terms, maybe looking out for how individual participants search for threshold figures.

  • 19.
    Viberg, Jennifer
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Segerdahl, Pär
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Langenskiöld, Sophie
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Hälsoekonomi.
    Hansson, Mats G
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Freedom of Choice about Incidental Findings can frustrate participants’ true preferences2016Ingår i: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 30, nr 3, s. 203-209Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Ethicists, regulators and researchers have struggled with the question of whether incidental findings in genomics studies should be disclosed to participants. In the ethical debate, a general consensus is that disclosed information should benefit participants. However, there is no agreement that genetic information will benefit participants, rather it may cause problems such as anxiety. One could get past this disagreement about disclosure of incidental findings by letting participants express their preferences in the consent form. We argue that this freedom of choice is problematic.

    In transferring the decision to participants, it is assumed that participants will understand what they decide about and that they will express what they truly want. However, psychological findings about people's reaction to probabilities and risk have been shown to involve both cognitive and emotional challenges. People change their attitude to risk depending on what is at stake. Their mood affects judgments and choices, and they over- and underestimate probabilities depending on whether they are low or high. Moreover, different framing of the options can steer people to a specific choice.

    Although it seems attractive to let participants express their preferences to incidental findings in the consent form, it is uncertain if this choice enables people to express what they truly prefer. In order to better understand the participants' preferences, we argue that future empirical work needs to confront the participant with the complexity of the uncertainty and the trade-offs that are connected with the uncertain predictive value of genetic risk information.

  • 20.
    Viberg, Jennifer
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Shah, Nisha
    Haraldsdóttir, Eik
    Bentzen, Heidi Beate
    Coy, Sarah
    Kaye, Jane
    Mascalzoni, Deborah
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Veldwijk, Jorien
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies2021Ingår i: Technology in society, ISSN 0160-791X, E-ISSN 1879-3274, Vol. 66, s. 101625-101625, artikel-id 101625Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Discrete Choice Experiment (DCE) is a well-established technique to elicit individual preferences, but it has rarely been used to elicit governance preferences for health data sharing. Objectives: The aim of this article was to describe the process of identifying attributes for a DCE study aiming to elicit preferences of citizens in Sweden, Iceland and the UK for governance mechanisms for digitally sharing different kinds of health data in different contexts. Methods: A three-step approach was utilised to inform the attribute and level selection: 1) Attribute identification, 2) Attribute development and 3) Attribute refinement. First, we developed an initial set of potential attributes from a literature review and a workshop with experts. To further develop attributes, focus group discussions with citizens (n = 13), ranking exercises among focus group participants (n = 48) and expert interviews (n = 18) were performed. Thereafter, attributes were refined using group discussion (n = 3) with experts as well as cognitive interviews with citizens (n = 11). Results: The results led to the selection of seven attributes for further development: 1) level of identification, 2) the purpose of data use, 3) type of information, 4) consent, 5) new data user, 6) collector and 7) the oversight of data sharing. Differences were found between countries regarding the order of top three attributes. The process outlined participants' conceptualisation of the chosen attributes, and what we learned for our attribute development phase. Conclusions: This study demonstrates a process for selection of attributes for a (multi-country) DCE involving three stages: Attribute identification, Attribute development and Attribute refinement. This study can contribute to improve the ethical aspects and good practice of this phase in DCE studies. Specifically, it can contribute to the development of governance mechanisms in the digital world, where people's health data are shared for multiple purposes.

  • 21.
    Viberg Johansson, Jennifer
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    INDIVIDUAL GENETIC RESEARCH RESULTS: Uncertainties, Conceptions, and Preferences2018Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
    Abstract [en]

    This thesis contributes to the ethical discussion on how to handle incidental findings in biomedical research using sequencing technologies from a theoretical and an empirical perspective. Study I and II are theoretical studies that used conceptual analysis. Study I demonstrates that the argument for disclosure based on the principle of beneficence ignores the complexity and uncertain predictive value of genetic risk information. The argument neglects the distinction between an incidentally discovered disease and an incidentally discovered risk for disease with unclear predictive value. Study II investigates the proposal to let participants express their preferences to incidental genetic findings in the consent form. The study argues that this freedom of choice is problematic because it is uncertain whether the opportunity to choose in the consent phase enables people to express what they truly prefer. Participants might be steered to a specific answer depending on mood, triggered feelings, and the framing of the question.

    The second part of the thesis is empirical and used both a qualitative and a quantitative approach. Study III investigates research participants’ understanding of genetic risk and used a phenomenographic approach and focus group interviews. One result was that participants understood genetic risk in binary terms. This understanding involved an either/or concept of genetic risk. Participants tend not to understand genetic risk as a probability. They also interpreted the information in terms of their past, present, and future life. Study IV used a questionnaire with a stated preference technique called Discrete Choice Experiments (DCE) to investigate participants’ preferences for genetic risk information. An effective preventive measure was the most important characteristic for research participants in their decision to be given genetic risk information. When the disease was life threatening, had a high penetrance probability, and had effective preventive measures, 98% of the participants wanted to know their incidental genetic risk information.

    As genetic risk information has many different characteristics and includes many uncertainties, ethical discussions and empirical studies of people’s attitudes and preferences need to explicitly engage the complexity of genetic incidental findings.

    Delarbeten
    1. Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks
    Öppna denna publikation i ny flik eller fönster >>Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks
    2015 (Engelska)Ingår i: Ethics, Law and Governance of Biobanking: National, European and International Approaches / [ed] Mascalzoni, Deborah, Springer, 2015Kapitel i bok, del av antologi (Refereegranskat)
    Ort, förlag, år, upplaga, sidor
    Springer, 2015
    Serie
    International Library of Ethics Law and Technology, ISSN 1875-0044 ; 14
    Nationell ämneskategori
    Medicinsk etik
    Identifikatorer
    urn:nbn:se:uu:diva-244975 (URN)9789401795739 (ISBN)
    Tillgänglig från: 2015-02-23 Skapad: 2015-02-23 Senast uppdaterad: 2018-08-01Bibliografiskt granskad
    2. Freedom of Choice about Incidental Findings can frustrate participants’ true preferences
    Öppna denna publikation i ny flik eller fönster >>Freedom of Choice about Incidental Findings can frustrate participants’ true preferences
    2016 (Engelska)Ingår i: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 30, nr 3, s. 203-209Artikel i tidskrift (Refereegranskat) Published
    Abstract [en]

    Ethicists, regulators and researchers have struggled with the question of whether incidental findings in genomics studies should be disclosed to participants. In the ethical debate, a general consensus is that disclosed information should benefit participants. However, there is no agreement that genetic information will benefit participants, rather it may cause problems such as anxiety. One could get past this disagreement about disclosure of incidental findings by letting participants express their preferences in the consent form. We argue that this freedom of choice is problematic.

    In transferring the decision to participants, it is assumed that participants will understand what they decide about and that they will express what they truly want. However, psychological findings about people's reaction to probabilities and risk have been shown to involve both cognitive and emotional challenges. People change their attitude to risk depending on what is at stake. Their mood affects judgments and choices, and they over- and underestimate probabilities depending on whether they are low or high. Moreover, different framing of the options can steer people to a specific choice.

    Although it seems attractive to let participants express their preferences to incidental findings in the consent form, it is uncertain if this choice enables people to express what they truly prefer. In order to better understand the participants' preferences, we argue that future empirical work needs to confront the participant with the complexity of the uncertainty and the trade-offs that are connected with the uncertain predictive value of genetic risk information.

    Nationell ämneskategori
    Medicinsk etik
    Identifikatorer
    urn:nbn:se:uu:diva-244971 (URN)10.1111/bioe.12160 (DOI)000371487500010 ()
    Forskningsfinansiär
    Riksbankens Jubileumsfond, PR2013-0123EU, FP7, Sjunde ramprogrammet, 305444VetenskapsrådetHjärt-Lungfonden
    Tillgänglig från: 2015-02-23 Skapad: 2015-02-23 Senast uppdaterad: 2018-08-01Bibliografiskt granskad
    3. Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research
    Öppna denna publikation i ny flik eller fönster >>Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research
    Visa övriga...
    2018 (Engelska)Ingår i: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 101, nr 3, s. 422-427Artikel i tidskrift (Refereegranskat) Published
    Abstract [en]

    Objective

    It is well known that research participants want to receive genetic risk information that is about high risks, serious diseases and potential preventive measures. The aim of this study was to explore, by qualitative means, something less well known: how do healthy research participants themselves make sense of genetic risk information?

    Method

    A phenomenographic approach was chosen to explore research participants’ understanding and assessment of genetic risk. We conducted four focus-group (N = 16) interviews with participants in a research programme designed to identify biomarkers for cardiopulmonary disease.

    Results

    Among the research participants, we found four ways of understanding genetic risk: as a binary concept, as an explanation, as revealing who I am (knowledge of oneself) and as affecting life ahead.

    Conclusion

    Research participants tend to understand genetic risk as a binary concept. This does not necessarily imply a misunderstanding of, or an irrational approach to, genetic risk. Rather, it may have a heuristic function in decision-making.

    Practical implications

    Risk communication may be enhanced by tailoring the communication to the participants’ own lay conceptions. For example, researchers and counselors should address risk in binary terms, maybe looking out for how individual participants search for threshold figures.

    Nyckelord
    Lay understanding; Conception of genetic risk; Making sense of genetic risk in research; Genetic risk communication
    Nationell ämneskategori
    Medicinsk genetik
    Identifikatorer
    urn:nbn:se:uu:diva-330221 (URN)10.1016/j.pec.2017.09.009 (DOI)000427826300007 ()
    Tillgänglig från: 2017-09-27 Skapad: 2017-09-27 Senast uppdaterad: 2018-08-01Bibliografiskt granskad
    4. Research participants’ preferences for receiving incidental genetic risk information: a discrete choice experiment
    Öppna denna publikation i ny flik eller fönster >>Research participants’ preferences for receiving incidental genetic risk information: a discrete choice experiment
    Visa övriga...
    (Engelska)Ingår i: Genetics in Medicine, ISSN 1098-3600, E-ISSN 1530-0366Artikel i tidskrift (Refereegranskat) Submitted
    Nationell ämneskategori
    Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi Annan hälsovetenskap
    Identifikatorer
    urn:nbn:se:uu:diva-356552 (URN)
    Tillgänglig från: 2018-08-01 Skapad: 2018-08-01 Senast uppdaterad: 2018-08-01
    Ladda ner fulltext (pdf)
    fulltext
    Ladda ner (jpg)
    presentationsbild
  • 22.
    Viberg Johansson, Jennifer
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Bentzen, Heidi Beate
    Univ Oslo, Norwegian Res Ctr Comp & Law, Fac Law, Oslo, Norway..
    Shah, Nisha
    Univ Oxford, Ctr Hlth Law & Emerging Technol, Fac Law, Oxford, England..
    Haraldsdóttir, Eik
    Univ Iceland, Social Sci Res Inst, Reykjavik, Iceland..
    Jónsdóttir, Gudbjörg Andrea
    Univ Iceland, Social Sci Res Inst, Reykjavik, Iceland..
    Kaye, Jane
    Univ Oxford, Ctr Hlth Law & Emerging Technol, Fac Law, Oxford, England.;Univ Melbourne, Ctr Hlth Law & Emerging Technol, Melbourne Law Sch, Melbourne, Vic, Australia..
    Mascalzoni, Deborah
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Inst Biomed, Bolzano, Italy.
    Veldwijk, Jorien
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Erasmus Univ, Erasmus Sch Hlth Policy & Management, Rotterdam, Netherlands.
    Preferences of the Public for Sharing Health Data: Discrete Choice Experiment2021Ingår i: JMIR Medical Informatics, E-ISSN 2291-9694, Vol. 9, nr 7, artikel-id e29614Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Digital technological development in the last 20 years has led to significant growth in digital collection, use, and sharing of health data. To maintain public trust in the digital society and to enable acceptable policy-making in the future, it is important to investigate people’s preferences for sharing digital health data.

    Objective: The aim of this study is to elicit the preferences of the public in different Northern European countries (the United Kingdom, Norway, Iceland, and Sweden) for sharing health information in different contexts.

    Methods: Respondents in this discrete choice experiment completed several choice tasks, in which they were asked if data sharing in the described hypothetical situation was acceptable to them. Latent class logistic regression models were used to determine attribute-level estimates and heterogeneity in preferences. We calculated the relative importance of the attributes and the predicted acceptability for different contexts in which the data were shared from the estimates.

    Results: In the final analysis, we used 37.83% (1967/5199) questionnaires. All attributes influenced the respondents’ willingness to share health information (P<.001). The most important attribute was whether the respondents were informed about their data being shared. The possibility of opting out from sharing data was preferred over the opportunity to consent (opt-in). Four classes were identified in the latent class model, and the average probabilities of belonging were 27% for class 1, 32% for class 2, 23% for class 3, and 18% for class 4. The uptake probability varied between 14% and 85%, depending on the least to most preferred combination of levels.

    Conclusions: Respondents from different countries have different preferences for sharing their health data regarding the value of a review process and the reason for their new use. Offering respondents information about the use of their data and the possibility to opt out is the most preferred governance mechanism.

    Ladda ner fulltext (pdf)
    fulltext
  • 23.
    Viberg Johansson, Jennifer
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Blyckert, Hanna
    Schölin Bywall, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Mälardalen University.
    Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study2023Ingår i: BMJ Open, E-ISSN 2044-6055, Vol. 13, nr 12Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objectives: Over the last few decades, there have been significant improvements in the treatment of rheumatoid arthritis (RA), with the development of new treatments and guidelines for teamwork and patient self-care and access to digital tools. This study aimed to explore the experiences of individuals with RA interacting with healthcare. It also looked at how a self-care application, an educational programme called the ‘healthcare encounter’, improved patient–doctor communication.

    Design: Semistructured interviews were conducted, and qualitative content analysis was performed.Setting The potential participants, individuals with established, or under investigation for, RA diagnosis at rheumatology clinics in Sweden, were asked to participate in the study via a digital self-care application called the Elsa Science Self-care app.

    Participants: Ten interviews were performed with participants from nine clinics following a meeting with the rheumatologist or other healthcare personnel between September 2022 and October 2022. Phrases, sentences or paragraphs referring to experiences from healthcare meetings and opinions about the digital programme were identified and coded. Codes that reflected similar concepts were grouped; subcategories were formulated, and categories were connected to their experiences and opinions.

    Results: Among our participants, three main categories emerged: the availability of healthcare, individual efforts to have a healthier life and personal interaction with healthcare. Participants described that the ‘healthcare encounter’ educational programme can be a source of information, which confirms, supports and creates a sense of control.

    Conclusion: The participants valued being seen and taking part in a dialogue when they had prepared themselves (observed symptoms over time and prepared questions). The implementation of digital self-care applications might need to be incorporated into the healthcare setting, so that both the patients and the healthcare personnel have a shared understanding. Collaboration is essential in this context.

    Ladda ner fulltext (pdf)
    fulltext
  • 24.
    Viberg Johansson, Jennifer
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Dembrower, Karin
    Strand, Fredrik
    Grauman, Åsa
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Women's perceptions and attitudes towards the use of AI in mammography in Sweden: a qualitative interview study2024Ingår i: BMJ Open, E-ISSN 2044-6055, Vol. 14, nr 2, artikel-id e084014Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Understanding women's perspectives can help to create an effective and acceptable artificial intelligence (AI) implementation for triaging mammograms, ensuring a high proportion of screening-detected cancer. This study aimed to explore Swedish women's perceptions and attitudes towards the use of AI in mammography.

    METHOD: Semistructured interviews were conducted with 16 women recruited in the spring of 2023 at Capio S:t Görans Hospital, Sweden, during an ongoing clinical trial of AI in screening (ScreenTrustCAD, NCT04778670) with Philips equipment. The interview transcripts were analysed using inductive thematic content analysis.

    RESULTS: In general, women viewed AI as an excellent complementary tool to help radiologists in their decision-making, rather than a complete replacement of their expertise. To trust the AI, the women requested a thorough evaluation, transparency about AI usage in healthcare, and the involvement of a radiologist in the assessment. They would rather be more worried because of being called in more often for scans than risk having overlooked a sign of cancer. They expressed substantial trust in the healthcare system if the implementation of AI was to become a standard practice.

    CONCLUSION: The findings suggest that the interviewed women, in general, hold a positive attitude towards the implementation of AI in mammography; nonetheless, they expect and demand more from an AI than a radiologist. Effective communication regarding the role and limitations of AI is crucial to ensure that patients understand the purpose and potential outcomes of AI-assisted healthcare.

    Ladda ner fulltext (pdf)
    fulltext
1 - 24 av 24
RefereraExporteraLänk till träfflistan
Permanent länk
Referera
Referensformat
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Annat format
Fler format
Språk
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Annat språk
Fler språk
Utmatningsformat
  • html
  • text
  • asciidoc
  • rtf