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 article1), 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 physicians2 might not have become reality and that many patients value direct access to their records3, increased their understanding of their medical issues as well as their sense of control4 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 exists5. 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.
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)7 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 ‘accommodation’ (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:
- 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.
- 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.
- 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.
- 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.
- 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.
Reflections on being an Interviewee
It was an interesting – and partly frightening – experience to read the transcript of my interview. It’s not that I want to take back what I said in the interview, but reading the transcripts made me aware that the way I talk is a bit more blunt than I write. But when reading the report I was quite happy with the quotes the selected. This again made me reflect on my research and I think this was a really good experience to keep in mind for the interviews I will conduct with people in the future.
Reflections on being called “Key Opinion Leader”
When they asked me to do this interview they didn’t call me a “key opinion leader”, but that’s what it actually says in the report. I have to admit, it feels weird to read my name on a list of key opinion leaders. Maybe this is the so-called impostor syndrome or the confidence gap that separates men and women? I have to say though, it really helps to have a mentor who reminds me every now and then, that I actually do know stuff. So at the end of this post, I’d like to give a shout-out to Åsa Cajander who always encourages me to take opportunities like giving a talk or the like.
- Erlingsdottir, G., & Lindholm, C. (2015). When patient empowerment encounters professional autonomy: The conflict and negotiation process of inscribing an eHealth service. Scandinavian Journal of Public Administration, 19(29), 27–48.
- Grünloh, C., Cajander, Å., & Myreteg, G. (2016). “The Record is Our Work Tool!” – Physicians’ Framing of a Patient Portal in Sweden. Journal of Medical Internet Research, 18(6), e167.
- Moll, J., Rexhepi, H., Cajander, Å, Grünloh, C., Huvila, I., Hägglund, M., Myreteg, G., Scandurra, I., Åhlfeldt, R.-M. (in press). Patients’ Experiences of Accessing Their Electronic Health Records: Results of a National Patient Survey in Sweden. Journal of Medical Internet Research.
- Rexhepi, H., Åhlfeldt, R.-M., Cajander, Å., & Huvila, I. (2016). Cancer patients’ attitudes and experiences of online access to their electronic medical records: A qualitative study. Health Informatics Journal, 165(367), 1–10. This paper was presented in 2015 at the International Symposium on Health Information Management Research, where it received the Best Paper Award.
- Joseph-Williams, N., Edwards, A., & Elwyn, G. (2014). Power imbalance prevents shared decision making. BMJ, 348(may14 7), g3178–g3178.
- Greenhalgh, T., Procter, R., Wherton, J., Sugarhood, P., & Shaw, S. (2012). The organising vision for telehealth and telecare: discourse analysis. BMJ Open, 2(4).
- Checkland, P., & Holwell, S. (1998). Information, Systems, and Information Systems: Making Sense Of The Field. Chichester: John Wiley & Sons.