Patient organisation wants to provide a self tracking system

Hello, I’m new here - and also new to selftracking and data collection. I work in a patient organisation (in Denmark) and we are working on the idea to provide data tracking for our members.
We are in the very early states of the project, and I’m here to learn from you, and to discuss the opportunities and the challenges in the idea.
The data tracking is meant to be a part of an online lifestyle universe where work out, yoga, mental health, food and tips&tricks are some of the other content we want to provide to our members.
The data we consider to provide: symptoms from the disease, subdiagnosis ,motion, yoga, work out, dance etc, cognition, diet, mental well being, quality of life in general, and eventually other data.
The idea is, that you can bring your tracking to the doctor and also, with the help of a dashboard with timelines etc, can monitor what is good for your quality of life and what is not.
I know the existence of apps like Withings Health Mate and, but I’m not sure they can be tailored to fit our needs?

How and where do we start this journey?
What do we need in expertise?
Does the perfect solution for our needs exists already?
Should we build our own system?
Are there people in, or near, Denmark that I should buy a cup of coffe and meet up with?

Thanks in advance for your thoughts and input

Hi Dorthe – there are some experienced self trackers and QS community contributors in Denmark. What is the name of your patient organization? Is there a web link with more info?

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Sounds like most of the data you have in mind is qualitative, so a notepad and a pencil should work quite well: Very flexible, and no tech-support issues :grin:


Maybe you can’t tell if Eric is teasing you or not but he really isn’t: not only is starting with pen/paper tracking a good idea because it helps develop an approach with low tech investment, this kind of tracking can fairly easily be an entry into more complex projects through entering the data into a simple spreadsheet.

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Thanks a lot for your input, Eric. That is true. It’s what you do with the data afterwards that is interesting. And if the data, by time, is collected and used as data for science and better treatment, it is more than ‘just’ the personal data tracking.
Also. The thing is, that our members have all ready some experience in collecting data in a paper sheet. We are searching for an easy and intuitive (digital) way to collect data.
I’m all new to this world and I’m here to learn and get some inputs on the idea, so thanks a lot again!

The organization is The Danish Multiple Sclerosis Society. We don’t have any online information on the (data leg of the) project yet, since it’s in the very start. What we do have, is a corner of the lifestyle project with some of the intended content like physical training, mental training and yoga. The site was launched in a hurry under the first strike from Corona in spring. We wanted to provide some home training for the members, since everybody was stuck at home.
There is no data tracking involved on the website. Only training and information. But by time our intention is to merch the content with data collecting and personalization.
The website is in danish:

Hi Dorthe,
Sharing with you a few pointers from my self-tracking experience over the past five years. First, I think the self-tracking journey is a very personal one for me. Communities like this one provide great support for this journey, but at the end of the day, the why/what/how details of my self-tracking are very unique to my situation. There are some general aspects that you may want to consider for example:

  • Establish a “lifestyle model” or in my case a model of well-being which is the main objective of my self-tracking focus. What are the dimensions of that model? For example I simplified my well-being model to Spiritual, Emotional, Physical, Financial, Intellectual (and sometimes Environment :innocent:). One you have your model, ask yourself what information do you need to collect in order to track changes to that model? In my case I need to track nutrition, sleep and workouts for the physical dimension, I also need to track mood, stress and social activities for the emotional dimension and so on.

  • External expertise is important but first and foremost, In my case, i felt the need to become more aware of my environment, more mindful of changes and impacts and what may be behind them. I feel this needs to be established prior to understanding what data needs to be collected

  • I don’t think a perfect solution exists. Again, part of the reason for this is the personal nature of self-tracking. The customization and tailoring needed to achieve a purposeful individual/tool fit are always changing until the individual feels they have the right data to inform their self-tracking objectives.

I know the digital aspects of self-tracking are important, but I agree with Eric and Gary on their suggestion. As with most things, the “what” is a lot more important than the “how” and anything that allows an individual to focus more on nurturing and growing a discipline of self-tracking is key here. Once this discipline has been established and honed, scaling up to a digital tool will just make it that much better. Good luck,

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Thanks, Sergio, You have some very good pointers that I will take with me. Can I ask you a hypotetical question? If you where asked (by an organization or NGO), would you be interested in sharing your data for science projects? Or is the tracking too personal to become a part of statistics and scientific evidence?

Hi Dorthe, It’s an interesting question. the data I collect is very much longitudinal in nature and extends into traditional domains (e.g. vitals, blood labs, sleep, activity, mood) as well as non-traditional domains (e.g. spiritual, time spent at dinner table, learning) over long periods of time.

I would be motivated to share the data If I had a sense that the organization I was sharing it with was on to something - in the form of a new algorithm or other insight that required this type of multidimensional well-being related data. I would also like to work together with them towards extracting value from it :nerd_face:

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There are many apps for recording user data. I like mySymptom’s likert-like symptoms recorder.

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