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.

La la Ladok

Our research group has a long tradition of doing action research. Action
Research has been defined as having dual aims, research as well as involvement. The latter implies things happening, action, change–a bit like agile development if you wish. At the same time, this is relative to scale. In a small project, things are happening fast and various actions by practitioner and researcher alike have direct consequences. In large projects, this is not always so. In retrospect it will be easier to see the change and trace a trajectory. In real time, especially in the periphery of a large project, it can be hard to experience any action.

One of ongoing action research projects we are following the local preparations for a major new system implementation. Deadlines have been pushed forward on numerous occasions–by years.

The system in question is the nationwide Swedish Student Information System (SIS) – better known by the name Ladok. The system holds all student records for students in Swedish higher education and is critical from a legal perspective but it is also the backbone for most other student related ICT as it is used to generate directory information that is used by learning management systems (LMS), campus cards etc. The system is long overdue for an upgrade and a completely new version is just in its early phase of implementation. This is a 50 million Euro project with an estimated user base of 400 000 students and 50 000 staff in higher education.

We have been following the local preparations at one university, rather than the development as such. The collaboration has included activities such as:

  • coaching,
  • seminars,
  • participation in information efforts and
  • surveys.

The major effort though, were the vision seminars that were conducted with students and staff (users that is) in order to establish high level goals. Thus, our focus has been on local preparations for a huge change in work processes that the new system will require.

While the constraints and uncertainties can be at times frustrating this is also the reality behind many large system implementations. In the next few posts we will further discuss some of our experiences from the project – so far.