Human Technology and Organisations Research Group

Tag: e-Health

NordiCHI 2024 Workshop – Design Methods in Connected Health

22 October 2024 /

On 13 October 2024, a quiet Sunday, I had this incredible opportunity of organizing and leading a pre-conference NordiCHI workshop along with my colleagues Åsa Cajander, Sofia Ouhbi and Awais Ahmad focused on Design Methods in Connected Health. It was an exciting day filled with lively discussions, fresh ideas, and a lot of collaborative energy. We had a diverse group of participants, all bringing their expertise to explore how design approaches can be used and can influence the landscape of connected health. Here’s a rundown of how the day unfolded and some of the most memorable moments.

Setting the tone

We kicked off with a quick introduction and overview. We wanted to ensure that everyone felt comfortable and that we were all on the same page about the goals of the workshop. The idea was simple: explore how different design methods can be be used and influence connected health solutions, particularly in making them more human-centered and responsive to real-world challenges. As participants introduced themselves, it became clear that we had a diverse group with varied experience and expertise in the connected health field. This diversity added depth to our conversations, as everyone brought unique perspectives to the table, enriching our exploration of the challenges and opportunities in designing for connected health.

Diving Into Design Methods

The first part of the workshop revolved around several short presentations, each one offering a unique design scenario for connected health. After each presentation, we held a Q&A where the group could reflect, ask questions, and share their own thoughts. This wasn’t just a formal back-and-forth – it felt more like a natural, flowing conversation where everyone got involved. People were eager to discuss both the opportunities and the challenges of each approach.

The discussions brought up a wide range of opportunities and challenges related to designing in connected health. As a group, we identified the most important and relevant topics that resonated with the participants. From these discussions, we selected five key themes that stood out for their relevance to the ongoing work in connected health. These themes were chosen to be explored further in the next session, where participants would pair up and engage in deeper discussions during a gallery walk. This allowed for a more focused exchange of ideas and practical insights on each theme.

Interactive Reflections: The Gallery Walk

In the afternoon, we switched things up with a Gallery Walk. This was a chance for participants to physically move around in pairs, reflecting on the key themes that had emerged earlier. Participants paired up and stopped by different stations, jotting down their thoughts, questions, or even new insights on the topics that stood out to them.

This was one of the highlights for us. It was incredible to see how ideas that had been discussed briefly earlier in the day could spark deeper reflections when people had the chance to digest them in a different way. By the end, we had walls full of notes, suggestions, and thought-provoking questions that built on each other.

Bringing It All Together

The day didn’t end there! After the Gallery Walk, we spent time reflecting on how these design methods could be applied in real-world scenarios. People considered how they could integrate these insights into their own work, which led to a discussion about potential collaborations.

To keep the momentum going, we began drafting ideas for a joint research paper. By the end of the session, we had a rough outline for the paper, which will hopefully lead to future collaborations.

Wrapping Up

As we closed the workshop, we could see a sense of accomplishment among tha participants. We had discussed complex ideas, brought diverse perspectives to the table, and, most importantly, walked away with new connections and insights. The workshop was an amazing opportunity to dive deep into connected health design methods, and I’m already looking forward to where these discussions and ideas will take us next.

It’s always inspiring to see how people from different backgrounds can come together to innovate and push the boundaries of what’s possible in health care. Watch this space for updates on the collaborative paper.

My Upcoming PhD defense – ‘Care for Caregivers: Designing IT Applications for Informal Caregivers’

9 September 2024 /

On Friday, September 13, 2024, at Uppsala University, I will defend my Ph.D. thesis titled Care for Caregivers: Designing IT Applications for Informal Caregivers. This research contributes to the field of Information systems and informal caregiving, focusing on how technology can be used to support informal caregivers—those who provide care to their relatives with illness or disabilities.

What is the Thesis About?

The thesis explores the development of IT applications to support informal caregivers. Informal caregiving often involves immense emotional, physical, and logistical challenges, all of which can take a toll on caregivers’ well-being. By identifying and analyzing the needs of caregivers, this research developed two primary IT solutions: an eCoaching platform and a web-based health application named Carer eSupport. These tools are designed to offer personalized guidance, resources, and support systems.

To design these applications, the thesis incorporates Persuasive Design and Positive Design approaches. Persuasive Design leverages behavioral psychology to encourage positive actions, while Positive Design focuses on enhancing emotional well-being. This research also critically analyzes their application in the caregiving context.

Why It Matters?

Caregivers play an essential yet often undervalued role in the healthcare system. They provide care, support, and comfort to their relatives in need, often with little formal training or external support. Despite the importance of their work, caregivers frequently struggle with balancing their responsibilities and maintaining their own well-being. This research highlights the crucial role that technology can play in supporting caregivers, providing them with accessible tools that can alleviate some of their burdens.

By addressing the needs of various caregiver groups, including native Swedish caregivers, immigrant caregivers, and those caring for patients with head and neck cancer, the thesis offers solutions that are tailored to the diverse needs of different populations.

Key Contributions

The thesis presents several key contributions based on interviews, focus groups, and evaluations conducted with caregivers and healthcare professionals:

  • Comparative Analysis: The thesis provides a comparative analysis of the Persuasive Systems Design (PSD) model and the Positive Design Framework for creating IT applications for informal caregivers. It highlights the strengths and weaknesses of both approaches, offers an in-depth reflection on their design processes, and evaluates their effectiveness in meeting caregivers’ needs. Additionally, it offers recommendations on when to use PSD or Positive Design based on the caregiving context and provides practical guidelines for integrating both approaches to balance functionality and emotional support.
  • Adaptation of Frameworks: The research adapts the PSD and Positive Design frameworks specifically for informal caregiving, highlighting their relevance and applicability to this context.
  • Ethical Considerations: The thesis discusses the ethical implications of using persuasive and positive design techniques.
  • Literature Mapping: A systematic literature review is provided, offering crucial design recommendations and identifying facilitators and barriers to the implementation of IT applications in informal caregiving.
  • Proposing IT Solutions: The development, exploration, and evaluation of IT applications are also key contributions, including an eCoaching platform and a web-based health application designed to address and support the complex roles of caregivers.

The Role of Technology in Caregiving: What It Can and Can’t Do

Supporting caregivers with technology is an exciting idea, but it’s important to remember that technology has its limits. Caregiving isn’t just about tasks—it’s about empathy, understanding, and human connection. While apps and digital tools can make things easier for caregivers by providing information, resources, and reminders, they can’t replace the care and warmth that come from a real human interaction.

The truth is, informal caregivers are often expected to do the work of healthcare professionals, even though they might not have the training, time, or resources. This puts a lot of stress on them, leading to burnout and, in some cases, poorer outcomes for the people they care for. And not everyone has access to a strong support system, making caregiving even harder for people in marginalized communities.

So, while technology can help caregivers by making their lives a bit easier, it shouldn’t be seen as a replacement for proper healthcare support. Caregivers need more than just apps; they need real, systemic support from the healthcare system. As we move forward, it’s crucial that research and policy work together to find better ways to take this burden off caregivers. Until then, IT applications can hope to provide some respite.

The Defense Day

On the day of the defense, the opponent, Professor Tone Bratteteig from University of Oslo, presents my research and then we engage in a discussion. This is followed by questions by the grading committee members and then the audience.

The defense will take place at 13.15 in room B115 at Ekonomikum, Uppsala University. I’m looking forward to it.

NordiCHI Workshop – Call for Participation

22 June 2024 /

Design Methods in Connected Health

We are excited to invite you to our interactive workshop, which will explore and advance design methods for Connected Health applications.

Full day on 13 October 2024, On-site at Ekonomikum, Uppsala University

The Design Methods in Connected Health workshop aims to bring together researchers, practitioners, and designers in eHealth to explore innovative design approaches and philosophies that can enhance the user experience, accessibility, and overall effectiveness of electronic health technologies. Connected health is a multifaceted concept encompassing technology to improve healthcare delivery and patient outcomes. Design methods are processes and tools for creating effective user experiences in technology development. 

This workshop will explore diverse design approaches from various fields, including Human-Computer Interaction (HCI), Information Systems (IS), Health Informatics, and Healthcare. 

It aims to foster the exchange of ideas and methodologies across these domains. The aims and objectives include 

  • to explore the diverse design methods in the context of eHealth applications, 
  • to discuss the impact of design on user engagement, and overall health outcomes, 
  • to share best practices and case studies of eHealth design implementations, 
  • to foster collaboration between researchers and practitioners for future advancements in eHealth design, and 
  • to collaborate on drafting a joint paper for a scientific journal, drawing upon the collective insights gained. 

The workshop will explore design methods, analyzing their strengths and weaknesses to determine the most suitable approach for different situations. Through a mix of presentations, group discussions, and collaborative activities like a gallery walk (an activity where participants rotate through stations to evaluate and discuss ideas), participants will engage in a dynamic learning experience. The workshop culminates in a collaborative effort to draft a joint paper for a scientific journal, drawing upon the collective insights gained.

The workshop will be in person and will feature an introduction to various design practices used in the eHealth field using a fishbowl discussion method. This will be followed by discussions on these philosophies using an interactive method called Gallery Walk, which is an activity where participants rotate through stations to evaluate and discuss ideas. This is followed by a wrap-up session. 

Who Should Attend?

  •    Researchers in design and Connected Health.
  •    UX designers specializing in Connected Health projects.
  •    Healthcare professionals interested in developing Connected Health solutions.

What to Expect:

  • Interactive Sessions: Participate in engaging discussions and a “gallery walk” to critically assess and compare different design methods.
  • Collaborative Paper: Collaborate with other attendees to co-author a paper intended for publication in a scientific journal, leveraging the collective expertise and insights acquired during the workshop.
  • Sharpen Your Skills: Improve your understanding of Connected Health design methods and acquire actionable knowledge to create user-centric Connected Health solutions.

Submission

The submission should be a maximum of 3 pages long.

  • Format: Please use the ACM submission template.
  • Title and Author Information: Clear and descriptive title of the submission. Name(s), affiliation(s), and email address(es).
  • Abstract: 100-150 words. A brief overview of the design method, its context, and the key takeaways.
  • Introduction: Provide background information and relevance of the design method to Connected Health. Outline the specific areas or challenges or issues the method addresses in Connected Health.
  • Design Method Description: Describe the design method in detail. Outline the steps, tools, and techniques involved. Mention any theoretical or conceptual frameworks underpinning the method.
  • Application and Context: Describe a specific use case or example where the design method was applied. Provide context about how the method was implemented, including settings, participants, and any technological tools used. Discuss any challenges encountered during the application of the method.
  • Outcomes and Lessons Learned: Summarize the outcomes or results achieved through the application of the design method. Share key insights or lessons learned from the experience. Discuss how the design method impacted user engagement, accessibility, or health outcomes.
  • Discussion: Analyze the strengths and weaknesses of the design method. If applicable, compare with other design methods used in similar contexts. Suggest potential improvements or future applications of the method in Connected Health.
  • Conclusion: Recap the key points of the submission. Propose next steps for research or practice in Connected Health design.
  • Appendices (Optional): Any supplementary material, such as diagrams, detailed tables, or screenshots of the design method in action.

Important Dates:

Deadline Extended!

  • Deadline for Abstract Submission – 13 September 2024
  • Notification of Acceptance – 16 September 2024
  • Workshop Date – 13 October 2024

Email your submissions to: Shweta Premanandan (shweta.premanandan@im.uu.se), Awais Ahmad (awais.ahmad@it.uu.se)

Workshop Organizers:

  • Åsa Cajander, Department of Information Technology, Uppsala University (asa.cajander@it.uu.se)
  • Sofia Ouhbi, Department of Information Technology, Uppsala University (sofia.ouhbi@it.uu.se)
  • Shweta Premanandan, Department of Informatics and Media, Uppsala University (shweta.premanandan@im.uu.se)
  • Awais Ahmad, Department of Information Technology, Uppsala University (awais.ahmad@it.uu.se)

How vulnerable are we?

12 February 2024 / / 1 Comment

This post was actually started in late 2023, when the Swedish Church had become the victim of a cyberattack with ransomware, which took place November 22. The church organization at that time decided that it will not pay the ransom (in order not to make this a successful attack) but will instead recover the systems manually over time. However, this recovery takes a lot of time, and as long as the systems are not completely recovered, it is not possible to make any bookings for baptizing and weddings. In case of a funeral, it has still been possible to make a booking, but, the data had to be taken down using pen and paper (i.e., post-it notes).

We are very vulnerable if we only depend on our digital systems.

Head of information services at the Swedish church

In Sweden, the church has been separated from the government, but it is also still responsible for a number of national and regional bookkeeping services, like funerals. Also, a large number of people will still use the church services for baptizing and weddings, where in the latter case it also fulfills its role as an official administrative unit, in parallel with the weddings that are registered by the government. Suffice it to say that the church depends heavily on digital administration for its work. Consequently, some parts of the Swedish society also depends on the same computer systems being intact.

More attacks…

In 2024, there has now been a number of similar events, mostly through the use of ransomware, but also with overloading web servers. The systems affected this time have been in other organizations and governmental institutions. The most famous of them this time is probably the HR management system Primula, which is also used by the defense organizations and industries, among many others (including universities). This time the attacks are suspected to be made Russian hackers, possibly as part of a destabilization campaign as part of the ongoing war in Ukraine.

Again, the main issue is not that there have been attacks that have been successful, but rather that the backup systems are insufficient or, in most cases seemingly missing. Hopefully the systems will soon be up and running again, but if there is an attack on systems that are more central to the functions in society, then the problem is not only in small organizations, but may affect larger systems including systems for money transfers. Recently shops have been forced to close, when there have been longer problems with the money services.

In this context it is also important to point to the problem with paying. The Swedish Civil Contingencies Agency (MSB), which is responsible for helping society prepare for major accidents, crises and the consequences of war, recently sent out a message to the public, advising them to always have at list 2000 SEK in cash at home. The question is whether the society is prepared to revert to using cash money for the transactions. A large number of shops and services no longer accept cash as payment.

What now

When interviewed, the head of the information service for the Swedish church said that one lesson they have learned from this event is that they have to be less dependent on computer services than before. He did not specify how in any more detailed way, but the message was more or less clear: “We are very vulnerable if we only depend on our digital systems”. His conclusion is neither new, nor especially controversial. When our computer systems or the Internet fails, we are more or less helpless in many places. However, most of the time, the threats are envisioned in terms of disk crashes, physical damage or other similar factors. The increased risk of cyber attacks is not mentioned to the public to any larger extent.

We depend on our IT-support units to handle any possible interrupt as fast as possible, but the question is whether this is enough. Are there backups of the data? Are there backup systems that are ready to be launched in case the old system is failing? Are there backup non-computer based procedures that can replace the computer systems if there is a longer breakdown of the computer systems? Even if it is costly to maintain these backup systems/procedures, it is quite likely that we will need to add a higher level of security in order to not end up with a social disaster, where a large part of the society is essentially incapacitated.

What are the consequences?

We can just imagine what would happen if, as mentioned above, the central systems for bank transfers fails badly or gets “cyber-kidnapped”. Credit cards will not work, neither will mobile money transfers or other electronic payment options. There will be no way to pay our bills, and we may not even get the bills at first hand. Probably even the ATM machines will cease to work, so that there is no possibility to get cash either. Imagine now that this failure will last for days and weeks. What are the consequences?

But we don’t have to look at this national disaster scenario. It is enough to think about what will happen if the computer systems in universities or other large organizations are attacked by cyber-criminals. Not to mention the effects on critical health care, where minutes and seconds can count. Do we have any possibilities to continue the work, reaching journals or other important documents, schedule meetings, planning operations and other important events? Are we really ready to start working on paper again, if necessary? I fear not!

With the current situation in the world, with wars and possible also challenges from deteriorating environmental factors, a lack of emergency plans for our digital systems may not only be causing serious problems, but may really turn out to be disastrous in case of any larger international crisis. Looking at what happens around the world currently, it is easy to see that the risk for cyber-attacks in international crisis situations has increased to a high degree. In many cases the (possible) plans on how to proceed are not known to people who work in the organizations. Is your work protected? Do you know what to do if the systems fail?

Unfortunately, we cannot continue to hope that “this will never happen”. Even if the most extreme of the possible scenarios may not happen, we are still very vulnerable to attacks, e.g., with ransomware or “Denial of service” from “normal cyber-criminals” and this can be just as bad on the local scene, when a whole organization is brought to a halt due to a computer system failing badly. Therefore we need to be acting proactively in order to not be stuck if/when the systems fail. Because, it is quite certain that they will fail at some point of time.

And how will YOUR organization handle that kind of situation? Do YOU know?

Empowering Unsung Heroes: Carer-eSupport – An Online Intervention for Caregivers of Head and Neck Cancer

20 April 2023 /

Cancer is a devastating disease that affects not only the patient but also their informal caregivers, who play a crucial role in caring for them, especially in the home environment. The role of a caregiver can be physically and emotionally exhausting, leading to stress, anxiety, depression, and post-traumatic stress disorder. With limited resources and information available to informal caregivers, the situation becomes even more challenging. In this context, eHealth applications might help caregivers to cope with their caregiving responsibilities and enhance their well-being.

Carer-eSupport project

The Carer-eSupport project is a commendable effort to provide support to informal caregivers of head and neck cancer patients. I am part of the Carer-eSupport project as a PhD student. The project’s overall goal is to prepare caregivers for their caregiving role and decrease their caregiving burden who often struggle to balance their caregiving responsibilities with their personal and professional lives.

In this project, we first gathered user needs and preferences from caregivers and healthcare professionals to ensure that the intervention is user-friendly, effective and acceptable. Based on these findings, the first version of Carer-eSupport is developed, followed by feasibility studies to evaluate its effectiveness and acceptability. The results from these studies will inform the design of the second version of Carer-eSupport. Thereafter, it will be tested through a randomized controlled trial, which will provide robust evidence of the intervention’s effectiveness. The project’s study protocol, “Internet-based support for informal caregivers to individuals with head and neck cancer (Carer-eSupport): a study protocol for the development and feasibility testing of a complex online intervention,” provides more detailed information. By prioritizing the needs and well-being of caregivers, the Carer-eSupport project has the potential to make a significant impact on the lives of informal caregivers of head and neck cancer patients.

An initial prototype of Carer-eSupport

User-centred Positive Design (UCPD) framework

To support informal caregivers’ subjective well-being, we proposed a User-centred Positive Design (UCPD) framework that combines User-Centred Design (UCD) and Positive Design Framework (PDF) as shown in the figure below. UCD is a systematic approach that considers users and their needs in all steps of design and development. PDF, on the other hand, describes how design can enhance the subjective well-being of users. By focusing on the subjective well-being of users, the UCPD framework aims to create eHealth applications that not only solve the user’s problem but also have a long-lasting and positive impact on their well-being.

User-centred Positive Design Framework

In conclusion, the UCPD framework provides a theoretical framework for designing internet-based support systems that have a positive, holistic impact on users’ well-being. The Carer-eSupport project serves as an excellent example of how the UCPD framework can be applied in designing eHealth applications for informal caregivers of cancer patients. With further research, the UCPD framework has the potential to enhance the subjective well-being of users across various domains of healthcare.

Research Team

Our research team comprises researchers from different disciplines, including human-computer interaction (HCI), software engineering, cancer nursing, and medical research. Following are the team members.

Further readings