Workshop at Uppsala Health Summit 2018: Using Data for Better Cancer Treatments

The international Uppsala Health Summit is an annual meeting for dialogue on challenges for health and healthcare. The summit is a collaborative effort between eleven Swedish public and not-for-profit partners, led by Uppsala University. Each year, the summit focuses on one challenge for health and healthcare and the question on how to overcome obstacles from implementing knowledge from research and innovations. Around 200 personally invited experts from all over the world and from different sectors come together to engage in dialogues in plenum sessions and in solution-oriented workshops. Last year, delegates came from 39 different countries.

Summit 2018: Care for Cancer

This year’s summit takes place form 14-15 June 2018 is themed Care for Cancer. Patients today have more opportunities than ever to survive and even to recover from cancer. However, the world is facing growing incidence and prevalence of cancer and preventive actions (e.g., adopting a healthy life-style) can only solve some parts of the problem. The provision of financial resources as well as equal access to treatments is challenging for healthcare systems around the world, despite growing treatment opportunities.

Uppsala Health Summit 2018 focuses on how we can open up these opportunities for a growing number of patients, by making better use of data and technologies and on how such use can pave way for a more equitable access to the best possible treatment and diagnostics within any given context.

The programme is available here and addresses a broad range of topics in workshops and plenum sessions. Some of these are: precision medicine in cancer care, patients as a driving force to develop care, long term care for cancer survivors, access to treatments and diagnosis, implementing physical exercise in cancer care, and many more.

Our Workshop: Using Data for Better Cancer Treatments

HTO group members Åsa Cajander, Christiane Grünloh, and Jonas Moll are also organising a workshop on Using Data for Better Cancer Treatments.  In our workshop, we will make use of the Critical Incidents workshop format we have used before at other venues (e.g., at NordiCHI 2016, which is described in more detail in this paper, and at Medical Informatics Europe 2018, which Jonas wrote about on his blog).

A critical incident is an event that has happened to a person and that this person regards as important or significant in some way. Such an incident can be very useful to learn from, and thus it can be an event that is perceived as positive or as negative. Critical incidents have been used a lot for critical reflection in areas such as aviation (e.g., to analyse failures or human errors), health, education and social work.

For our workshop we reached out to experts and asked for incidents we could use in our workshop to inspire discussion in the group work. Kelechi Eguzo, Marije Wolvers, and Isabella Scandurra will present their critical incidents, which have been illustrated by Maja Larsson.

As the aim of our workshop is to develop Visions of the Future, we are very happy that Prof. Bengt Sandblad will give a keynote on Future Workshops, which is a well established method that has been used in various domains (e.g., healthcare, traffic control, administrative work). Making use of the instructions for a future workshop, we will then develop visions of the future from different perspectives: researcher, physician, nurse, or patient.

Together with more than 60 delegates who signed up for our workshop, we will sketch A Day In a Life in 2050. As workshops at the Uppsala Health Summit are solution-oriented, we are including answers to questions such as:

  • Who must be involved?
  • Who can take the first step?
  • How will this contribute to more efficient cancer care?
  • How will this contribute to more equal cancer care?
  • Improve to the individual patient’s quality of life
  • How can this influence which health decisions the patient and her kin can make?

We are really looking forward to the Health Summit and will also attend other workshops and plenary sessions. You can read the pre-conference report where all workshops are outlined here.

Article in Interactions Highlighing the SIGCHI/EIT Health Summer School

Last summer many from the HTO group joined the SIGCHI/EIT Health Summer School that was organised in Dublin and in Uppsala/Stockholm. The photo in the blog post is from the amazing library at Trinity Colleague.

The magazine Interactions highlighted the summer school in their latest edition.

The article highlights some of the learning experiences from organising such a summer school, such as that demand is high for such summer courses, patient participation is very valuable and that it was easy to recruit contributors to the summer school.

I know that the other organisers of the summer school thought that it was a lot of administration, but all agreed that it was also great fun!

Interactions also highlighted some of the HTO groups’ blog posts about the summer school found here:

Jonas Moll: https://molljonas.wordpress.com/2017/07/01/ehealth-summer-school-in-dublin-day-5/

Christiane Grünloh: https://www.htogroup.org/2017/07/08/behaviour-change-social-practice-theory-and-learned-helplessness/

Diane Golay: http://dianegolay.ch/2017/07/05/on-humans-computers-and-why-users-should-not-be-blamed-for-struggling-with-computerized-systems/

 

Presentation by Åsa Cajander and Jonas Moll at Medical Informatics Europe

During the first day of the Medical Informatics Europe (MIE) Conference Åsa Cajander and I presented the paper that was introduced in this blog post. Actually, this was the first presentation held by representatives from the HTO group during this year’s combined MIE/Vitalis event, but certainly not the last – we were active on stage, or as workshop leaders, during each and every day!

This particular presentation was based on a study that was conducted within the scope of a master’s thesis project at Uppsala University by Sara Englund and Anastasia Hansman. The project focused on the Swedish patient accessible electronic health record system Journalen (and hence was tightly connected to the DOME consortium) and more specifically on how nurses see that Journalen has affected their work environment and their communication with patients.

The result of the semi-structured interviews conducted with the nurses at a primary care center in Region Uppsala, first of all showed similar as our earlier interviews with physicians – Journalen has changed the interaction with patients, created an increased workload and created uncertainty regarding when to inform patients of results now that the patients can read even unsigned notes. Even though most of the results were in line with results from our earlier research in DOME, one new theme arose from the interview analysis – the need for new knowledge. Several nurses indicated that education was needed, focusing on how Journalen should be used both by patients and in the clinician-patient relationship. This is an important result, which should be taken very seriously.

All conference papers are published open access, so you can find all research presented at MIE here. You can find the paper that Åsa and I presented here.

Stay tuned for more posts about the HTO activities at MIE/Vitalis 2018! 🙂

Workshop on Identifying the Need of Self-reported Data and Self-measurements for Diagnosis and Treatment of Cancer

Jonas Moll, Åsa Cajander, Christiane Grünlog and Isabella Scandurra are organising a workshop at Medical Informatics Europe on “Identifying the Need of Self-reported Data and Self-measurements for Diagnosis and Treatment of Cancer”

Today, numerous data sources are available to healthcare professionals for diagnosing and treating cancer, but there are also data captured by patients, e.g. related to daily progress, which are not readily accessible to healthcare.

In this workshop, we will use the critical incidents technique to inspire participants to elaborate on the need of using new data collections and measurements, for example from continuous self-tracking, as well as utilizing already existing data in new ways for diagnoses and treatment of cancer. Real-life critical incidents related to patients, healthcare professionals, and researchers, will be discussed and used as a basis for scenarios that will illustrate future visions of how self-reported data and self-measurements should be used in combination with existing data sources.

 

Welcome to the workshop!

To register, visit the MIE website. 

 

 

 

Can Digital Forms with Contextual Instructions Improve Medical Certificates for Sick Leave? – A Master Thesis Study

To get paid sick leave in Sweden, one must obtain a medical certificate from a physician and get it approved by the Social Insurance Office (Försäkringskassan). A recent report showcase that 9,7 % of all medical certificate forms are sent back to the issuing physician by Försäkringskassan (2017), needing completion or re-phrasing of the filled in data. The biggest culprit in the form is the field where one should describe how the patient’s condition hinders them from working.

In collaboration with EPJ, Region Uppsala and the company Inera, I will in my master thesis evaluate if a digital version of the form can help mitigate the frequent rejection of forms (due to phrasing). With a number of different prototypes, we will try to uncover if contextual instruction to each form field can help physicians fill in the form in a way that better corresponds with Försäkringskassans expectations.

The project has a great potential not only to ease the burden of an already strained health care system (and their patients), but also in regards of understanding physicians’ needs when it comes to IT. In the best of worlds, the results can help us design better health care systems and ensure a sound health care. It is truly exciting to work on projects that has the potential to impact many patients’ life quality, where an early approved medical certificate can mean the world to many.

Author background

Anton Björsell, Uppsala University. The study is my master thesis project within HCI and is planned to be executed throughout February to May this year. Except my focus on HCI, I also hold a bachelor’s degree in Media and Communication Studies. My favourite kind of research is the one which makes an honest attempt to understand humans and their needs. I am very excited about the project and grateful for having the opportunity to work with a topic that concerns so many people.

A Seminar (in Swedish) on the Implementation of IT in Healthcare

Back in December I was invited to give a seminar in Swedish at the EPJ department of Region Uppsala, the department in charge of many of the health-related IT systems used at the hospitals and primary care facilities in the region. My seminar was on the the current state of research in relation to how to implement IT in healthcare. Out of all the perspectives one can use to approach this area of challenges for healthcare, I devoted most of the seminar to presenting barriers and enablers to change management projects as well as IT development projects, and discussing these with the participants. The seminar was recorded and is now available on YouTube, if you find the topic interesting (and are comfortable with the Swedish language).

The HTO group, and more generally the HCI group at the Department of Information Technology, Uppsala University, have an ongoing collaboration with the EPJ department at the region, and there will be more seminars on a variety of topics given by us during the spring.

PhD Thesis: The Importance of eHealth Innovations: Lessons about Patient Accessible Information

Sofie Wass successfully defended her PhD thesis last week at Jönköping University, and I was the opponent at the defense. The thesis is about eHealth Innovations and consist on work related to two eHealth innovations: medical records online for patients & the service “My referrals”. Two papers are on medical records online for patients in her thesis.

Sofie Wass included five publications in her thesis and she has used an unusual variety of methods in her papers. You find 1) one literature study on open innovation and eHealth, 2) one interview study with experts and decision makers in health care, 3) one study on using business models for eHealth including interviews, a workshop and observations, and finally also 4) one study using interviews and 5) a survey to health care professionals and one to patients.

The thesis is well worth reading for those who are in the eHealth and innovations area. The introduction text includes an overview of eHealth in Sweden with some of the major milestones described around the progress of eHealth. Here one can read that the official work with strategic work in eHealth started as late as 2002, and that the coordination of eHealth in Sweden has been coordinated by different organizations throughout the years.

There are also some interesting facts found in the thesis such as, here presented randomly:

  • 70% of all eHealth projects fail to achieve their goals 🙁
  • There are few studies on eHealth and Open innovation: Only 18 papers were found in her literature study.
  • Test results is the feature in medical records online that is highest ranked as an additional feature to rank in Jönköping county
  • Professionals working in outpatient clinics were less positive towards medical records online for patients than those in primary care.

 

 

INTERACT 2017 in Mumbai – Part 2

As I wrote in the previous post, I recently had the opportunity to attend and present at INTERACT which took place in Mumbai, India. In this post, I write about two posters & demos. The Poster and demos sessions took place in every coffee / tea break during the whole conference, giving the attendees plenty of opportunitities to visit the individiual demo booths.

HeartHab

Supraja Sankaram presenting her HeartHab application

Supraja Sankaran (Hasselt University, Belgium) demonstrated a tool to personalize e-coaching based on individual patient risk factors, adherence rates and personal preferences of patients using a tele-rehabilitation solution. In their abstract, she and her co-authors Mieke Haesen, Paul Dendale, Kris Luyten and Karin Coninx describe, that they

developed the tool after conducting a workshop and multiple brainstorms with various caregivers involved in coaching cardiac patients to connect their perspectives with patient needs. It was integrated into a comprehensive tele-rehabilitation application.

Supraja was one of the participants in our EIT Health / ACM SIGCHI eHealth summer school (see here, or here), so it was really nice meeting her again at the conference. Supraja was born in India, and she went out of her way helping us Non-Indians, for instance explaining the food or local practices to me. It was really fun!

Mind the Gap

Another extremely interesting demo was the game “Mind the Gap – A Playful Take on Gender Imbalance in ICT” by Max Willis and Antonella De Angeli (University of Trento). I had met Antonella already on Monday during the field trip and she introduced me to Max (her PhD student) during lunch. Thus, we already talked briefly about the game and I couldn’t wait to play it. They outlined the aim on their poster:

Mind the Gap is a provocative, playful intervention and a research tool that illuminates players’ attitudes and experiences concerning gender privilege and discrimination in ICT. It initiates a structured social interaction around gender issues driven by role-play and participant authored texts.

The gameboard charts a typical technology carreer path. Female Player Characters (PC’s) roll a 4-sided die, male PC’s roll a 6-sided die. Players advance and draw a ‘privilege’ card describing a scenario which is scored to reflect a penalty or an advanage according to the gender of the PC.

During the game, players an author their own privilege cards, add decisions, or create new rules and add them to the game.

Playing this game was really fascinating, but also reading the cards authored by previous players. It didn’t take long for me to pick the card which you see in the picture below: “Congrats! You will have a baby!” As my character was female like me (the character is drawn at the beginning of the game), I had to leave the career path and go on the family path.

“Mind the Gap”  by Max Willis and Antonella De Angeli

Later I drew the card “Change gender to female, if you are men”. Too bad – I might have wanted my character to change to male in that case 🙂 The game drew a lot of attention and it was really interesting. I am really looking forward to reading more about their findings in the future. For more information, visit their project website.

At the end of the conference, the organisers showed us the following clip they put together, which I think is really nice:

INTERACT 2017 in Mumbai – Part 1

This year’s INTERACT conference took place in Mumbai, India. It started off with field trips and workshops on Monday and Tuesday. The main conference was held from 27-29. September. The conference was extremely well organised and I am very glad that I could attend, listen to interesting talks, present our own paper, and meet so many kind and open people who do extremely interesting research.

What is INTERACT?

INTERACT is a biennial conference and is organised by the Technical Committee on Human–Computer Interaction (IFIP TC13) of the International Federation for Information Processing (IFIP). IFIP is a non-governmental umbrella organisation of national societies working in the field of Information technology. IFIP is organised through technical commitees; TC13 is the committee on Human-Computer Interaction and consists of serveral working groups. This year’s INTERACT conference was the 16th conference; the previous one took place 2015 in Bamberg (Germany). INTERACT in Bamberg was my first international conference, where I  presented a paper on the use of online reviews in the design process and how they can help designers to take the perspective of the people they are designing for.

Field Trip

This year was the first time, that researchers could propose field trips. As the deadline for registrating one’s interest was before I was notified that our short paper was accepted, I thought that participation was not possible any more. However, Arne Berger, the organiser of one field trip saw on Twitter, that I was attending the conference and asked whether I was interested in joining one day, as there was still a free spot. Excellent opportunity indeed! The field trip Understanding The Informal Support Networks Of Older Adults in India aimed to get a nuanced view on older adults’ practices of receiving from and providing support to peers, family, friends, and neighbors. It was a two-day fieldtrip, however, I only attended on Monday. Here we were split into two groups and I was forming a group together with Dhaval Vyas (Queensland University of Technology) and Antonella De Angeli (University of Trento). We conducted two interviews during the day. The couple we interviewed first felt more comfortable speaking in Hindi, so Dhaval interviewed them, and every now and then translated his question and/or their answers in English. That was a really interesting experience and Dhaval did a great job also including us, when he translated every now and then, what was said. Of course, this was not always possible, as this would have disturbed the flow of the conversation. Something I noticed was that the idea of “older people receiving support” was challenged: This couple was not receiving support from their family in that sense. Instead, they were providing tremendous support for their children, because they took care of the grandkids.

The second interview took place in the afternoon, where we met a 85 year old woman, who had worked as a teacher until she was 80 years old. She felt comfortable speaking English, so all of us could ask her questions. I found her to be very inspiring and positive; it was a great pleasure talking to her and learning how she goes about her day. For example, she likes playing chess on the iPad and, according to her son, her memory improved since she does this. Every evening, she meets a couple of her female friends outside the house, where they all sit on the bench, enjoy each other’s company, and watch the grandkids play. We were invited to join her when she was meeting her friends right after the interview, which was really nice, too.

Indian women on the bench in front of their house with Arne Berger (TU Chemnitz)

Presenting our Paper on “Critical Incidents as Workshop Format”

I also was able to present our short paper on “Using Critical Incidents in Workshops to Inform eHealth Design”. This paper is based on the workshop we organised at NordiCHI 2016 and was written together with some of the organisers and participants. Practitioners, researchers and patients were invited to contribute with a critical incident related to eHealth services for patients and relatives. We accepted five critical incidents, of which three focussed on the patient perspective and two on the developer’s perspective. You can find the critical incidents submitted and analysed in the workshop here.

Christiane Grünloh presenting at INTERACT 2017

In the paper, we reflect on Critical Incidents as a format, which we made use of in our workshop. In sum, the participants and we as organisers found it very helpful to reflect together in a group on eHealth projects. Even though the format was quite unusual and some participants reported, that they struggled to follow our instructions related to the critical incidents, it also helped to re-examine and re-frame their particular project. I really enjoyed presenting this at INTERACT on behalf of my co-authors. I have to admit, that the time constraint of 8 minutes was quite tough. But our session chair Jacki O’Neill did a wonderful job creating a positive atmosphere while keeping the time.

In part 2, I will write about the poster & demo session.

HTO are Organizing a Workshop @ Uppsala Health Summit 2018

Uppsala Health Summit is “a recurring international policy arena for dialogue on challenges for health and healthcare, and how we can overcome them”.  In 2018 the theme for the summit is cancer, and the HTO group has been asked to organize a workshop in the area of using existing data for diagnosis and treatment of cancer. We see this as a great opportunity to address this important issue and take it one step further towards a solution.

People who are personally invited are welcome to join this health summit. The project manager on the summit, Madelein Neil, personally invites decision makers, opinion formers and experts.

The HTO group are currently working on setting up the ideas for our workshop. We have had a few discussions and so far, we are thinking of re-using the concept of critical incidents that Christiane Grünloh presented at the INTERACT conference this year. The abstract of this paper is:

Demands for technological solutions to address the variety of problems in healthcare have increased. The design of eHealth is challenging due to e.g. the complexity of the domain and the multitude of stakeholders involved. We describe a workshop method based on Critical Incidents that can be used to reflect on, and critically analyze, different experiences and practices in healthcare. We propose the workshop format, which was used during a conference and found very helpful by the participants to identify possible implications for eHealth design, that can be applied in future projects. This new format shows promise to evaluate eHealth designs, to learn from patients’ real stories and case studies through retrospective meta-analyses, and to inform design through joint reflection of understandings about users’ needs and issues for designers.