Author: Åsa Cajander (Page 2 of 5)

Involving diverse stakeholders—patients, caregivers, and healthcare professionals—in research is a cornerstone of participatory health research (PHR). But how do we ensure that everyone, regardless of their background, can actively contribute to meaningful research? A recent study sheds light on Stakeholder Skill Training (SST), highlighting its critical role in empowering participants and fostering mutual learning.

The Challenge: Bridging Knowledge Gaps

Participatory research requires a shift in traditional research roles. Patients and healthcare professionals bring valuable lived experiences, but they may not be familiar with research methodologies. Similarly, researchers may lack experience in co-creation with non-researchers. This creates a knowledge gap that can hinder collaboration.

To address this, SST provides tailored training that equips stakeholders with the skills needed to engage confidently. However, the study reveals that there is no one-size-fits-all approach—training varies widely depending on the project’s goals and the participants’ backgrounds.

Five Key Themes in Stakeholder Skill Training

Through a workshop at NordiCHI 2022, researchers explored what makes SST effective. The discussions led to five crucial themes:

1. The Terminology Debate: Is “Training” the Right Word?
   The term training implies a top-down approach, where knowledge is delivered from an expert to a learner. However, participatory research is about mutual learning, where everyone brings expertise. Should we call it collaborative learning instead?
2. Hierarchy, Power, and Culture
   Traditional research settings often reinforce power imbalances between researchers and participants. SST should promote equitable partnerships, where different forms of expertise—academic, professional, and lived experience—are equally valued.
3. Mutual Learning: A Two-Way Street
   Researchers learn as much from patients and professionals as they do from textbooks. SST should be designed as a dialogue, rather than a unidirectional learning process.
4. Creating a Common Language
   Different disciplines and stakeholders may use the same words with different meanings. For instance, the term implementation means something different to health researchers than it does to software developers. Establishing a shared vocabulary is key to avoiding misunderstandings.
5. Inclusivity: Reducing Barriers to Participation
   Not all stakeholders have the same access to time, education, or resources. Effective SST must ensure accessibility—from financial compensation to flexible training formats that accommodate diverse needs.

Moving Forward: Making Stakeholder Training Work

The study suggests several best practices for designing effective SST:

• Define a common vocabulary together with stakeholders.
• Focus on mutual learning rather than one-way instruction.
• Create a safe and inclusive learning environment.
• Recognize and address power dynamics early in the process.
• Adapt training to the time constraints of participants, particularly patients and healthcare workers.

By rethinking how we train stakeholders, we can make participatory health research more inclusive, impactful, and empowering.

You find the full paper here: https://link.springer.com/chapter/10.1007/978-3-031-77318-1_33

Vi är stolta över att kunna meddela att DOME-konsortiet har beviljats fortsatt finansiering från Forte för att stärka forskningen kring patienters tillgång till sina journaler och delad hälsodata. Med den snabbt växande digitaliseringen av hälso- och sjukvården och den nya EU-förordningen om ett gemensamt European Health Data Space (EHDS) står vi inför en tid av stora förändringar och möjligheter.

Vad är DOME-konsortiet?

DOME (Deployment of Online Medical Records and eHealth Services) är ett forskningskonsortium som har varit en ledande aktör inom forskning om patienters tillgång till sin journal online och relaterade e-hälsotjänster sedan 2012. Konsortiet har producerat över 130 forskningspublikationer, varav mer än 30 publicerades under de senaste tre åren.

DOME är unikt genom att samla forskare från flera discipliner och olika karriärnivåer – från doktorander till professorer – inom områden som teknik, samhällsvetenskap, medicin och humaniora. Konsortiet har en stark nordisk förankring men verkar också internationellt, med samarbeten i Europa och USA.

Varför är DOME-konsortiet mer relevant än någonsin?

Den nya EU-förordningen om European Health Data Space (EHDS), som införs 2024, kommer att förändra hanteringen av hälsodata i hela Europa. Den syftar till att:

• Skapa en gemensam standard för hur hälsodata delas mellan EU-länderna.
• Ge patienter ökad kontroll över sin egen hälsodata.
• Stärka patientsäkerhet och integritetsskydd.

Men även om Sverige ligger långt fram i digital journalåtkomst via 1177.se, finns flera utmaningar där DOME-konsortiets forskning kan bidra, bland annat:

• Ojämlik tillgång till journaler – Alla vårdgivare är inte anslutna, vissa kliniska områden (t.ex. psykiatri) exkluderas fortfarande.
• Brist på ombudsfunktioner – Vuxna patienter kan i dag inte ge en anhörig fullständig tillgång till sin journal.
• Begränsade möjligheter för patientinvolvering – Patienter kan inte kommentera sin journal, flagga felaktigheter eller tillföra egna hälsodata.
• Informationssäkerhet och cyberskydd – Hur skyddar vi patientdata i en tid av ökande digitala hot?

DOME-konsortiet har en unik möjlighet att inte bara bidra med forskning utan också att påverka hur dessa frågor hanteras på både nationell och europeisk nivå.

Vad innebär den nya finansieringen?

Den nya finansieringen från Forte innebär att DOME-konsortiet kan:

• Fördjupa och bredda samarbetet med nordiska och europeiska forskare.
• Vidareutveckla internationella samarbeten med nya kontakter i Storbritannien, Tyskland, Bulgarien, Kroatien och Georgien.
• Bidra till den svenska implementeringen av EHDS genom samarbete med E-hälsomyndigheten och andra aktörer.
• Delta i policy- och beslutsprocesser genom internationella konferenser och seminarier.

Vill du veta mer?

Vi ser fram emot att fortsätta dela med oss av våra forskningsresultat och insikter genom seminarier, konferenser och publikationer. Håll utkik på vår webbplats domeconsortium.org för uppdateringar och möjligheter att engagera dig i vårt arbete!

Rose-Mharie Åhlfelth, Maria Hägglund och Åsa Cajander leder DOME-konsotriet.

Tack till Forte för förtroendet – vi ser fram emot tre spännande år av forskning och samverkan!

As 2024 comes to a close, it’s time to reflect on what has been a good and productive year for the HTO (Human-Technology-Organization) research group.

A Year of Ideas and Impact

This year, we published around 40 blog posts, each highlighting different aspects of our research, collaborations, and reflections. From exploring the intersection of AI and work environments to celebrating milestones like conferences and thesis defenses, our blog has been a window into the exciting journey of the HTO group in 2024.

One publication examined why patients choose to engage with their health records—or not. Alongside a review of IT tools for informal caregivers, these studies underline the real-world impact of our research, tackling challenges that resonate with people’s everyday lives.

We also celebrated a significant milestone: on September 13th, Shweta Premanandan defended her PhD thesis, Care for Caregivers: Designing IT Applications for Informal Caregivers. This achievement marked the culmination of years of dedication and a substantial contribution to the field.

Connecting and Growing Through Events

A highlight of the year was hosting NordiCHI 2024 in Uppsala, bringing together over 300 participants from across the globe. With the theme “Live – Uniting HCI for a Hyperlocal World,” this event showcased the best of human-computer interaction research and practice.

We also presented at the AHFE conference in Nice, shared findings at Gilla Jobbet in Malmö, and hosted workshops like Design Methods in Connected Health. These events allowed us to exchange ideas, forge new partnerships, and spotlight the work of our talented team.

A Creative and Collaborative Spirit

Beyond conferences and publications, we embraced opportunities to foster innovation and reflection. Karin van den Driesche’s Biomimicry for HCI workshops inspired fresh perspectives on design by exploring lessons from nature. Meanwhile, the Krusenberg Writing Retreat gave us a space to focus on research in a peaceful, inspiring environment.

We have also worked with a strategic vision for the group which resulted in HTO’s Long Term Goal:

“To cultivate a supportive and inclusive research environment that prioritizes its members’ well-being and professional development while advancing innovative, interdisciplinary research. Through collaboration, education, and outreach, we aim to generate impactful knowledge that addresses societal challenges and inspires the next generation of scholars and practitioners.”

Looking Ahead

As we look ahead to 2025, we’re glad to continue building on this momentum, tackling challenges and making meaningful contributions to the world of human-centered technology. More specifically we will organise a seminar series on writing funding applications, and launch a Scientific writing club seminar related to establishing good writings habits and skills. We will also continue with HTO lunches and other social activities.

To everyone who has read, collaborated, or supported us this year—thank you! Let’s keep the conversation going.

✨ Stay connected by following our blog, and let us know your thoughts on the year that was.

#HTOResearch #Reflections2024 #HCI #DigitalHealth #Innovation

On November 5th, the TARA Project held its second reference group meeting online via Microsoft Teams. The meeting brought together participants from across the aviation industry to share updates and exchange ideas about the project’s progress.

For those unfamiliar, the TARA Project is a three-year collaboration between Uppsala University and TYA, funded by AFA Insurance. It focuses on exploring how automation, digital tools, and AI can be introduced into aviation while ensuring a safe and healthy work environment. The ultimate goal is to create practical methods that the industry can use when adopting new technologies.

Key Topics Discussed

The meeting agenda covered several important areas:

1. Stakeholder Study
   The team shared insights from interviews with various stakeholders about the challenges and opportunities of implementing new technologies in airport operations. Discussions highlighted the importance of balancing safety, efficiency, and collaboration to ensure that these changes benefit everyone involved.
2. Ground Staff Study
   Updates on this study focused on how new tools and systems are shaping the daily work of ground-handling staff. While new technologies can improve processes, they also come with challenges that need to be addressed to support workers effectively.
3. Encouraging Participation in Surveys
   With an upcoming survey as part of the project, participants shared strategies for increasing response rates. Engaging with the industry and making the process straightforward for participants were some key takeaways.
4. Looking at Global Trends
   The group explored trends in aviation technology and discussed what they might mean for the industry, from automation to sustainability. These conversations emphasized the importance of preparing for the future while keeping workplace well-being a top priority.

What’s Next?

This meeting showcased the value of open dialogue and collaboration in tackling the challenges of technology adoption in aviation. By bringing together diverse perspectives, the TARA Project aims to create tools and methods that ensure both safe and efficient integration of new technologies.

A big thank you to everyone who joined and contributed to these important discussions. We’re excited to keep building on this work and seeing where it takes us!

As Västra Götalandsregionen (VGR) embarks on the ambitious Millennium EHR project, it’s crucial to draw lessons from past large-scale implementations. A study by Morten Hertzum, Gunnar Ellingsen, and Åsa Cajander provides invaluable insights into the challenges and outcomes of introducing the Epic electronic health record (EHR) system in Denmark and Finland. This study holds significant relevance for VGR’s journey, especially given the concerns raised about Millennium’s implementation, as highlighted in this interview.

The Nordic Experience with Epic

The study focuses on two large-scale Epic implementations:

• Denmark: The system went live in 2016–2017 across 12 hospitals serving 2.6 million citizens.
• Finland: Starting in 2018, Epic was rolled out in the Helsinki-Uusimaa region, integrating healthcare and social care for 1.7 million people.

Despite extensive preparation, both implementations faced persistent challenges, including usability issues, productivity dips, and unmet expectations. Five years post-implementation, 32% of Danish users remained dissatisfied, while only 9.3% of Finnish physicians felt the system improved care quality.

Key Takeaways for the Millennium Implementation

1. Unmet Expectations: Both Danish and Finnish projects suffered from a gap between high pre-implementation hopes and post-implementation realities. The study emphasizes the importance of realistic goal-setting and proactive issue resolution.
2. Usability Matters: Poor interface design, unclear terminology, and excessive clicks plagued users, leading to frustration. These issues were often exacerbated by attempts to fit a U.S.-centric system into a Nordic healthcare model.
3. Long-Term Adaptation: Initial productivity dips lasted longer than anticipated, and resolving system issues required years, not months. Planning for extended adaptation is critical.
4. Workload Redistribution: Shifting documentation tasks to physicians without adequate support led to dissatisfaction. Any similar changes in Millennium need careful consideration.
5. Localized Customization: Balancing regional standardization with local needs is complex. Both Denmark and Finland struggled to find the right mix, leading to discontent among users.

The study underscores the importance of learning from past implementations to avoid repeating mistakes. These large implementation project must prioritize usability, realistic planning, and user-centered design to succeed where others have struggled. Transparent communication and adaptive strategies will be vital in navigating the complexities of a project of this scale.

For a deeper dive into the study, the full analysis is available in the International Journal of Medical Informatics.

In the digital age of healthcare, why do some patients engage with electronic health records (EHRs) while others opt out? A study led by Irene Muli with Åsa Cajander from HTO and others explore this question. Conducted seven years after Sweden introduced patient-accessible electronic health records (PAEHRs), the research reveals both progress and persistent gaps in adoption.

The study found that while 86% of patients were aware of PAEHRs, 23% chose not to read their records. Common reasons included feeling they didn’t need to or being satisfied with information from their doctor. Meanwhile, readers primarily sought a health overview or followed up on healthcare visits. A digital divide emerged, with older adults, single individuals, and those with lower information literacy less likely to engage, while smartphone access significantly increased use.

Key Takeaways for Healthcare Providers

Barriers like portal usability and digital literacy hinder PAEHR adoption. For healthcare professionals, simple actions—such as guiding patients during visits—can improve uptake. Targeted support for older or less tech-savvy patients is essential to ensure equitable access.

The Swedish experience highlights opportunities for other countries: usable portals, better training, and promoting the benefits of digital tools. By addressing these barriers, we can make healthcare more inclusive and empower all patients to take charge of their health.

To dive deeper, the full paper is accessible here.

The rapid digitalization of healthcare has created new opportunities for both patients and professionals. The ConnectMe project, a research initiative led by Uppsala University, aims to explore the potential of digital technologies in mental health care. This project focuses on the concept of Connected Mental Health and investigates how digital tools, such as video consultations, can influence the work environment for clinicians while providing flexible mental health services to patients.

Project Overview

Mental health challenges have been on the rise in Sweden, placing significant pressure on healthcare systems. In response to this growing demand, ConnectMe seeks to address the impact of telemedicine and other connected mental health solutions on the work-life flexibility of healthcare professionals, particularly in mental health contexts.

The project will explore three key areas:

1. Influence on Clinicians’ Work Environment: How connected mental health applications, such as video consultations, affect the daily experiences and working conditions of mental health professionals.
2. Comparisons Across Healthcare Contexts: Differences in the use and impact of these digital tools across various clinical settings, such as primary, secondary, and fully digital care environments.
3. Guidelines for Implementation: Recommendations for designing and implementing connected mental health solutions that support both flexible work environments and high-quality care for patients.

Methods and Data

To achieve these goals, the ConnectMe project will use a mixed-method approach, combining qualitative interviews with psychologists and psychiatrists, a national survey, and a Delphi study involving experts in the field. These methods will help gather insights into how different digital tools are being used, the challenges faced by healthcare professionals, and what needs to be improved to create more flexible and sustainable working conditions in mental health care.

The Importance of Flexibility

One of the driving forces behind the ConnectMe project is the need for flexibility in mental health care. Telemedicine, particularly in the form of video consultations, has been widely implemented during the COVID-19 pandemic. It offers potential benefits such as greater accessibility for patients and more flexible working conditions for clinicians. However, challenges remain, including the increased cognitive workload and stress associated with managing digital tools.

Through this project, the research team hopes to provide practical recommendations for ensuring that connected mental health tools enhance, rather than hinder, the work environment of clinicians. The findings will be used to develop guidelines that support a flexible and efficient use of digital technologies in mental healthcare.

Meet the ConnectMe Project Team

The ConnectMe project is led by a multidisciplinary team combining expertise in health informatics, software engineering, occupational health, and human-computer interaction. Together, they aim to improve flexibility in mental health care through connected technologies.

• Maria Hägglund, PhD (Project Leader): An associate professor in Health Informatics, Maria specializes in digital health innovations and implementation science. She leads the project, focusing on enhancing work-life flexibility for mental health professionals.
• Åsa Cajander, PhD: A professor of Human-Computer Interaction, Åsa researches the impact of digitalization on healthcare work environments, bringing crucial insights into how connected tools affect clinicians.
• Charlotte Blease, PhD: An associate professor in Health Informatics and Research Affiliate at Harvard Medical School, Charlotte contributes her expertise in digital psychiatry and ethics, focusing on the real-world impact of telemedicine.
• Sofia Ouhbi, PhD: An associate professor specializing in software engineering, Sofia ensures that connected health tools meet the needs of clinicians and patients, focusing on technical solutions for a flexible work environment.
• Magdalena Ramstedt Stadin, PhD: A postdoctoral researcher in occupational health, Magdalena explores how digitalization affects work-related stress and well-being, particularly in mental health settings.

Future Impact

The ConnectMe project aims to provide actionable insights that can be applied in both clinical settings and digital health policy. The recommendations from this project will contribute to the broader understanding of how digital tools can shape the future of mental health care, ensuring that both patients and clinicians can benefit from a more connected and flexible healthcare system.

As the project continues over the next three years, we will share more updates and findings that can inform the future design and implementation of digital mental health solutions.

For more information about the project: https://connectme.blog.uu.se/about-connectme/