Philips Future Health Index 2018 released

Last July, I was approached by someone from the Philips team in London that works on the Future Health Index program. Previously they launched the first part of the 2018 Future Health Index, which is the indicator of the value delivered by 16 national health systems from around the world. For the second part, they wanted to produce some tangible guidelines on how things can improve and drive change within the industry.

In order to develop these guidelines, they interviewed 12 key opinion leaders (KOLs) across the Netherlands, US, UK, Australia, Germany, China, Sweden and Estonia – and I was one of them.

The Interview Questions

The interviewer was so kind to send me the transcript of my interview, otherwise I probably would not have remember them. I really enjoyed talking to him, which is not surprising given that people’s experiences with and attitude toward eHealth services is my PhD topic.

We started with my PhD research and I gave a background on the Swedish patient portal through which Swedish citizens can access their electronic health records online. We talked about the initial reaction from healthcare professionals and the conflict between the project and the local medical association (you can read about it in this article), how patients receive it, and what I think about this situation compared to, for example, Germany. Research within the DOME consortium indicates that the initial concerns of physicians might not have become reality and that many patients value direct access to their records, increased their understanding of their medical issues as well as their sense of control. In relation to that, I was asked whether the lesson would be to impose the intended change even if it is against heavy criticism of particular stakeholders. This really is a tricky question, especially in a context like healthcare in which a power-imbalance between clinician and patient still exists. I think, if real change is supposed to happen, sometimes consensus is impossible if the people who are supposed to change are against it. But at the end of the day, all stakeholders (like patients, family, physicians, therapists, nurses, management, insurance etc.) are (or should be) “in the same boat” so to speak and work together.

One of my favorite quotes on this is from Greenhalgh et al. (2012) who called for more effective inter-stakeholder dialogue in relation to telehealth and telecare:

The different interest groups described in this paper are likely to continue to exist in an uncomfortable truce with one another, competing for dominance as they gain more or less public appeal, professional credibility, political power, resource and so on.

and with reference to Checkland & Holwell (1998) they add:

While consensus is not a realistic or even desirable goal, surfacing such things as assumptions and values, and inviting debate on their significance through intersectoral and interdisciplinary dialogue will help achieve what systems thinkers have called ‘accom- modation’ (acknowledgement of, and adaptation towards, other perspectives and practices).

Future Health Index: Key Recommendations

I recommend to read the full report, which you can download here: Part 1, Part 2. According to the Future Health Index research, ‘universal’ electronic health records plays an important role in the future, for example regarding integration of and more effective use of data. They identified five key concrete recommendations to overcome challenges and drive integrated care:

  1. Get regulation right.Clearly defined polices and robust data privacy and security standards at the national level build confidence in all parts of the healthcare continuum and help healthcare institutions develop their own data codes of practice, as well as encouraging healthcare professionals and the general population to collect, share and analyze data with greater confidence.
  2. Modernize education.Healthcare professionals won’t demand EHRs and AI tools at work if they don’t learn to rely on them during medical training. Increasing healthcare professionals’ adoption of these tools must start with their integration into medical school curriculums.
  3. End top-down implementation.Healthcare professionals are unlikely to adopt new tools when they’re presented as a ‘fait accompli’ by technologists. Creating EHRs and AI solutions in collaboration with both healthcare professionals and the general population will have a significant impact on successful integration.
  4. Prove and explain value.Both healthcare professionals and patients need to be able to easily understand how data collection and analytics tools make a difference. Constantly measuring and communicating outcomes will create a body of evidence that will help bridge the understanding gap.
  5. Harmonize data standards.Companies, healthcare professionals and governments in each market must work together to reach a greater degree of consensus on data formats and protocols.

Parts of this post originally appeared in a slightly different form on the my personal blog.

Workshop at EPJ, Uppsala University Hospital, about eHealth Benefits Realization

I attended a very interesting workshop last Thursday, arranged by Birgitta Wallgren at EPJ (the department for Electronic Patient Records), with the Advisory Board. The topic was eHealth Benefits Realization: “It doesn’t happen all by itself”.

Advisory Board is a global research, technology, and consulting firm helping hospital and health system leaders improve the quality and efficiency of patient care. At this occasion, the Global eHealth Executive Council’s Senior Research Director Doug Thompson discussed the major activities and purposes of eHealth benefits realisation, common challenges, and tools and solutions that could be of value to the hospital in Uppsala. The audience consisted of specially invited people from the hospital, managers (physicians) from different departments and specializations, project leaders, and IT-developers in different roles. The day included the talk from Doug, supported by a power point presentation, some practical exercises, and it included a break for lunch. In smaller groups, we discussed specific issues relevant for our hospital in Uppsala and then presented our ideas to the bigger group. We got valuable input from Doug on our thoughts and ideas.

The general question was how to realize performance improvements at the hospital with the support of information technology, such as the EPR, or clinical decision support (CDS). The message from the Advisory Board is that we need to work structured, and with an awareness that this is not only a “technology project”. By making use of six best practices, developed by the Advisory Board, it is possible to realize more potentials from EPRs than the “low hanging fruit” that were harvested already. The Advisory Board’s model is to have benefit driven implementation and optimization. By clearly stating the wanted benefits and by identifying what mechanisms are driving each benefit (making it occur) you create a common ground for actors where it is possible to analyze problems and decide on valid routes for action. Else, it may happen that your gut feeling is sending you a false image of what is going on. It is important that you know where you want to be heading, and you need some tools to make sure you are on the right track. This conclusion can certainly be of help in many situations in life!

Kick-off for a series of posts on teaching and learning

In addition to the research that we do, many of the members of HTO are involved in lots of teaching activities at the department of IT in Uppsala. Some of the courses we teach are in the area of health care, and here we have a very good collaboration with Region Uppsala. The setup of this collaboration is to aim for a win-win between students learning and the Region’s goals and visions. We have collaborated with the Region since around 2004, and it has resulted in many new learning opportunities as well as input to innovations in health care both for the Region and for the nation.

We also work with innovation and development of learning opportunities in our teaching. Åsa Cajander is a member of the Uppsala Computing Education Research Group, and this community gives lots of input and ideas for improvements of courses.

This semester we collaborate with Region Uppsala through our course on Medical Informatics and the course IT in Society. We also collaborate through joint master theses on topics of interest to the Region. We have asked a couple of our current students to write blog posts about their experiences during their thesis work, and this fall the HTO blog will contain a series of blog posts on teaching and learning activities related to the HTO group.

New Article in Press: Patients’ Experiences of Accessing Their Medical Records

In 2012, Region Uppsala gave its 300,000 citizens access to their medical records through a patient portal. Today, the service called Journalen has become the Swedish national service. The DOME consortium is conducting research on the effects of this service on healthcare and has conducted several research studies before, for example, an interview study with cancer patients, with physicians from different specialities, a survey with patients who have read their paper-based records, surveys with nurses and physicians. Given that the service has been launched already a few years ago, we wanted to investigate patients’ experience with the service and their motivation to access their record

Method: National Patient Survey

The questionnaire for the national patient survey was designed by several researchers in the DOME consortium and was informed by previous studies conducted. The process started in spring 2016 and was coordinated by Hanife Rexhepi from Skövde University. The final questionnaire addressed six areas:

  • General questions related to the PAEHR system
  • Questions targeting experiences from using the content of PAEHR
  • Information security
  • General questions about information needs, behaviour, and information-seeking styles
  • Personal health related questions
  • Demographics

Data was collected through the patient portal from June to October 2016.

Analysis: Overview of National Patient Survey

The questionnaire addressed several important aspects related to patients reading their electronic health records. To give an overview, we focused in this article on the following questions:

  • Why do patients in Sweden use Journalen? And how often do they use it?
  • What types of information are most valued by patients?
  • What are the general attitudes by patients towards Journalen?
  • What differences can be identified with regards to attitudes between different county councils in Sweden?

The analysis and writing process was led by Jonas Moll.

Summary Results

The survey was initiated by 2,587 patients on the national level. The majority of respondents responded to use Journalen about once a month and the most selected reasons for using it were:  1) to receive an overview of one’s own medical history and treatment, 2) to follow up on doctor’s visits, and 3) to become more involved in one’s own care.

The top three reasons why patients believe that Journalen is important are that it 1) makes them feel more informed, 2) improves their communication with care, and 3) results in a better understanding of one’s own health status. The most important resource, according to the survey, is test results. In general, the respondents had a very positive attitudes towards Journalen as a reform and considered access to their medical records as good for them. The attitudes did not differ greatly between respondents from different county councils.

The paper has been accepted for publication by the Journal of Medical Internet Research, is currently in press, and can be read as pre-print here.


Feature Image by rawpixel on Unsplash

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.