Project Update: Inquiry into effectiveness and efficiency of self-monitoring based management of Multiple Sclerosis
In late September 2022 - in the middle of this project around digital self-monitoring - we spoke to Lotte Krabbenborg (Radboud University) and Sonja Cloosterman (MS sherpa, formerly Orikami). Lotte Krabbenborg is associate professor of Science in Society at Radboud University's Faculty of Mathematics and Natural Sciences. She deals with the question under which conditions citizens can influence the creation, implementation and social embedding of new technological/scientific developments such as nanotechnology, biofuels and artificial intelligence.
Sonja is chief clinical officer at MS sherpa. MS sherpa has developed an app aimed at giving people with MS more control over their disease by collecting and displaying personalised information using validated tests via a smartphone application. By using this app, they gain more disease insight and are supported in adapting their lifestyle. The researchers will evaluate whether or not this increases patients' quality of life and independence.
In this project, together with PhD students Karine Wendrich and Pam Molenaar and several partners (including Amsterdam UMC and the MS fund), they will investigate the added value of self-monitoring in clinical practice based on a clinical study in MS patients. In addition, 3 other MS centres are involved to enrol enough participants for the study.
Scientists, philosophers and data scientists 'How are new technologies changing the world'
Lotte's Data2Person project revolves around self-monitoring: self-monitoring of health data through technologies such as smartphones and wearable sensors. From Radboud University, both the Institute for Science in Society and the data science group are active in this project. Lotte: "The great thing about this project is how we are set up from different disciplines and have an equal role within this research. This also allows us as social scientists to contribute a lot, including creating feedback loops between our findings on doctors' and patients' concerns and experiences and innovation processes." Sonja adds "the strength of this collaboration is that we bring a number of things together here, conduct both quantitative and qualitative research with great involvement from the field. With the aim that we develop something that also continues to be used. We learn from each other, have been able to make improvements to the tool, use insights from previous research and know what each other's role is. The interaction is therefore pleasant and smooth."
And then came Corona...
Because of Corona, certain parts of the study came 'on hold'. "From our proposal, we also wanted to follow patients at home, which was no longer possible. Also, doctors were less available." Lotte continues "in principle, it was of course galling that we could not carry out our research as we had envisaged. Still, great things came out of that such as a greater focus on people who cannot or do not want to use the app. Together we found creative ways to continue anyway, we can take a beating." Sonja adds "previously collected data could of course be viewed nicely from home, having more time meant we could also make this nicely visual for doctors and apply it in the current study. We are therefore happy with what we have now."
"However, Corona also resulted in a doctor stating that he longed for the app 'if only I had your tool now, I could monitor people remotely. Now they can't but the hospital and I don't know anything about these patients'. How nice is that!"
Algorithms
The first step was to develop algorithms to provide personalised information to people with MS. These algorithms are being developed based on clinical data collected through the app and other clinical data from previous studies in which people with MS have used digital self-monitoring. The content and presentation of personalised information in the MS sherpa App was then developed in consultation with MS care professionals and people with MS, as well as an insights dashboard for MS caregivers. This further developed app and dasboard are now being investigated in the current study. "What was difficult in this was defining the end point for this study," Sonja explains. "We therefore took our time to define exactly what we wanted to achieve and where we wanted to see improvement. From the literature, little is still known about implementing digital solutions. We now mainly focus on the question 'how does the patient feel and how much control does he feel.' This took a lot of thinking to make the right choice of study design."
100 versus 100 + 25
This study has now started in September at Amsterdam UMC, among others, dividing people with MS into two groups: 100 who do use the app and 100 who don't, and 25 additional participants (oversized to include additional interviews). The first people with MS have been included in the study. The app users will be followed for a year and interviews will take place in between to see how the app does/doesn't help someone. The doctors and caregivers involved can track this information via the dashboard. Doctors are therefore also interviewed in this study. "We now also want to take the step that doctors will actually use insights from the dashboard in treatment considerations," Sonja says. The intervention consists of using the MS sherpa App and dashboard to monitor progression in MS and personalise treatment based on it. Both the person with MS and the caregiver can access this information via the MS sherpa app or dashboard.
Focus on patients not using the app
Additional research is also taking place among the group that does not want or cannot use an app, precisely to find out what the reason is why someone does not participate. "Four motivations are identified from the literature, from what is the role of companies in healthcare and what happens to my data to I already know my body well enough. Or they can't use the app because they don't have a smartphone or don't know how to interpret it. Just the group that wants to but can't, maybe we can come up with strategies for that that they can participate." Sonja adds "there is also a group of patients who do not want to be confronted with their values/disease on a daily basis, and for that reason do not participate."
Ideal picture
Lotte: "Getting the variety of voices, wishes and needs on the table is a great outcome for us. This can serve as excellent input for health insurers so that they can use it to make the right choices." Sonja concurs and adds. "From MS sherpa, we hope that doctors and patients realise that such methods are useful and that, as a result, the care pathway will be designed differently. In addition, the data/evidence is a good basis to start implementing this in practice ism all partners. So really get digital innovation going, with conversations about inclusion in packages, reimbursements etc. And acceptance in the field based on the quantitative and qualitative data we collect in this study."
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