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.

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! 🙂

Physicians, Patients and the Patient-Accessible EHR

Christiane presenting her draft of her doctoral thesis on April 17, 2018

Christiane Grünloh, one of the members of our research group, will soon be defending her PhD thesis. Last week, it was time for her to present a draft of her work, which she plans to defend by the end of the year. I jump on the opportunity to write of few lines on her research, which revolves around the Patient-Accessible Electronic Health Record online.

Christiane is one of the researchers of the DOME Consortium, working on the Development of Online Medical records and E-health services. She has been focusing on investigating the perspective of, respectively, physicians and patients on the EHR online – “Journalen” in Swedish. Research about this topic is particularly important since the implementation of Journalen in Sweden has been a very controversial project. Indeed, while patient organizations predominantly were in its favour, caring professionals were, for the most part, against it.

In her research, Christiane was able to look more closely at the reasons behind physicians’ strong opposition to the idea of enabling patients to access their EHR online. She was also able to investigate what was the value of this service from the patients’ point of view. In doing so, she found that physicians and patients had very different perspectives on the topic, and reflected on ways to bridge the gap between those two groups in order to improve the quality of the patient-physician relationship.

You can find Christiane on Twitter (where she is a very active user!) and LinkedIn. If you were attending the Vitalis / MIE 2018 conference in Gothenburg, you maybe also were able to attend her workshop on “Identifying the Need of Self-reported Data and Self-measurements for Diagnosis and Treatment of Cancer”, which she is held together with Jonas Moll, Isabella Scandurra and Åsa Cajander last Thursday.