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.
CoI: multiple
Completely agree, health data should be treated differently and there should be tight controls on how these companies can use it, I don’t think they should be allowed to monetise the data at all. At least with GDPR we have the right to be forgotten and they must adhere strictly to our requests for deletion.. however – the benefit some of these companies get from mass health data on a scale is worth a lot of money I imagine… even once it’s been deleted. They’d still have all of their analysis and ‘general’ information.
I wish the general public cared more about internet privacy issues. The depressing reality is that I think the general public just don’t care. Its always the argument ‘I have nothing to hide so I don’t mind’ – which is problematic..
You should read Edward Snowden – Permanent Record too. A very quick read 🙂
On another note I already get targeted adverts for Tecfidera!
P.S Babylon – the health app ran by Ali Parsa (no comment there..). Of which Matt Hancock has done paid advertorials for in the past..: https://blogs.bmj.com/bmj/2018/12/04/rachel-clarke-why-matt-hancocks-promotion-of-babylon-worries-doctors/
I wouldn’t trust that company.
May I will send Matt Hancock a free copy of “The Age of Surveillance Capitalism” and ask him if he knows what is happening to NHS data collected via these 3rd party apps?
Re: “On another note I already get targeted adverts for Tecfidera!”
I hope you are based in the US? If you live in the UK this would be illegal.
I’m based in the UK, London! It’s through Facebook adverts. Next time I get one I’ll screenshot it. Where would I report?
Advertising Standards Authority: https://www.asa.org.uk/make-a-complaint.html
Ah yes of course 🙂 thanks!
Just looked through my advert history (you can see everything you clicked on within the past 3 months) on Facebook and actually I was advertised the cure of HCST in Mexico. Heh. See:
https://imgur.com/a/TFIDMxM
Technically, is that a medicine and does that break the law too?!
I have a supmarket loyalty card and as I went food shopping with my mum over Xmas and used the card for her food, I keep getting adverts and special offers for meat. I’m vegetarian.
Speaking of a meat free diet and iron deficiency, it can cause restless leg syndrome. So it might not be the MS after all.
Something for me to think about and monitor.
MouseDoctor here
Control of our own data….I guess dream on, the digital age has made us the most surveyed people. Who needs the FBI/CIA and MI5/MI6 when you have a smart phone google and facebook. We are being tracked every second of the day and all our actions are being monitored…..and I suspect sold on.
Every time I go to youtube my adds are for Grammarly….This blog has created my downfall.
They have spotted I can’t spell.
As to what comes on the phone I won’t tell you and no it isn’t Lovehoney:-)
I bet Google realise that I am not the Drug dealer that the Home Office seems to be searching for when they keep stopping me. It drives me nuts so guess what I got for Christmas…..yep a Deep Pole and a New Name. ProfG, ProfK and NDG have laughed when I told them what it is. 🙁
Will I still get grief from the Home Orifice
Is the Deep Pole a philosopher from Warsaw?
very good
You need to get yourself Brave browser – https://brave.com it tells you how many trackers are on each page and can block them. It’s actually sometimes rather shocking!
There are some simple things one can do… I use only Firefox browsers, never touch Facebook (which is full of crap anyway), only record my self monitoring information in a text document saved securely on my laptop.
Please take a look at what Irish hospitals appear to have done to pwMS. Their government seems to have sold them out (and all of their relatives) without any consultation, never mind consent.
https://twitter.com/antoin/status/1184109793340018694?s=20
I think a full commitment to never sharing data is best. Informed consent is rarely informed or consensual when a doctor presents something to you as a good idea. Especially for a population who suffer from cog-fog.
If a reasonably good, and trustable, opportunity to use those data in the future arises. Then it should be up to the individual to download the data from one source and upload to the other one. None of these ‘click here to agree’ automated transfers.
…
On a personal note, i am very thankful for the edss / think hand tracker. I would not be able to maintain that data on my own. I am delighted to see this book appear on this blog!