Barts-MS rose-tinted-odometer ★
I have been a big proponent of self-monitoring and using data and its interpretation to change my own and hopefully my patients’ behaviour. However, since reading Shoshana Zuboff’s book on surveillance capitalism over the Christmas break I am having second thoughts.
Surveillance capitalism is how tech companies are using the surplus data they collect on us to create detailed individualised digital profiles and to then use the profiles to target us with adverts or to repackage the data and to sell it on for third parties to use. This is a big business and is getting bigger.
In parallel to this happening in the commercial sector, it is beginning to happen in medicine, i.e. we are developing health and wellness, and disease-specific self-monitor, apps for our patients. A lot of these apps are being developed and controlled by the pharmaceutical companies and there is no transparency about how the data will be potentially used in the future. Combine data from these health apps with general data collected from other sources and we have a big brother scenario, where third parties can start to target you subliminally. For example, the data could be used to suggest you change your treatment.
To avoid the misuse of self-monitoring data we are going to have to develop an ethical code of practice that is transparent to all concerned. I personally think we should own our own data and if it is harvested, either overtly or covertly, we should know how it is being used. We should also have the right to delete our harvested data and hence prevent third parties exploiting it.
The following is my presentation from ECTRIMS two years ago when I make the argument for self-monitoring. I am now going to have to include a disclaimer saying yes self-monitoring has the potential to transform the way we manage MS, but it is important that the data collected as part of self-monitoring is owned by the person being monitored and that the data cannot be used for other reasons without informed consent. Do you agree?
Wendrich et al. Toward Digital Self-monitoring of Multiple Sclerosis: Investigating First Experiences, Needs, and Wishes of People with MS. Int J MS Care. 2019 Nov-Dec;21(6):282-291.
BACKGROUND: Digital self-monitoring, such as through smartphone applications (apps) or activity trackers, could be applied to monitor the health of people with multiple sclerosis (MS). This self-monitoring could facilitate personalized therapies and self-management of MS. The acceptance of digital self-monitoring tools by patients depends on them being able and willing to use these tools in their daily lives.
METHODS: In-depth interviews were conducted with seven adults with MS before and after participation in a study in which they used an activity tracker and an MS-specific smartphone app for 4 weeks. We inquired about experiences with the tools in daily life and needs and wishes regarding further development and implementation of digital self-monitoring for people with MS.
RESULTS: The smartphone app and the activity tracker increased respondents’ awareness of their physical status and stimulated them to act on the data. Challenges, such as confrontation with their MS and difficulties with data interpretation, were discussed. The respondents desired 1) adaptation of digital self-monitoring tools to a patient’s personal situation, 2) guidance to increase the value of the data, and 3) integration of digital self-monitoring into treatment plans.
CONCLUSIONS: These findings show that patients can provide detailed descriptions of their daily life experiences with new technologies. Mapping these experiences could help in better aligning the development and implementation of digital self-monitoring tools, in this case smartphones and activity trackers, with the needs and wishes of people with MS.