In nursing it has always been clear that you are the one who protects patients right to privacy. You use only the information you need to do your job and share as little as possible to others about his or her’s situation. Only the information they need to do their job. That’s how I’ve been taught. Today’s world is changing fast by digitalization. It creates a situation where one needs to look at things in a new way, understand the world as it is today and learn new things. How do we keep the good old principles alive when everything seems to be out in the open anyway?
From overly cautious to a bold experimenter
I work as a nurse at a cancer association. People contact us in a situation where they experience maybe the biggest crisis of their life. We offer information and support to our customers in the way that they need: by conversations, giving advice and guidance, helping them understand the situation they’re in and recover from it in different ways. We offer private service but also for example peer support groups and rehabilitation courses.
Our privacy principles have always been very strict: we record customer data as little as possible. We don’t keep record of names or addresses and we often use nicknames when we make statistics about our customers and contacts. There are a few exceptions, of course. It’s necessary to have data about our members and them who participate in the rehabilitation courses. But the main principle has always been: collect only the data you really need. I think the main reason is the platform we store the information in. It’s not as safe as the platforms in public health centers or hospitals. This fact kept us overly cautious for a long time. In addition to this we also tried to avoid all the risks about the customers finding out who the other people were who attended our services. So, no name lists in peer support groups or using apps that required personal data like phone numbers that could have been seen by others. But then the Covid-19 pandemic hit.
The pandemic forced us to learn new ways to serve our customers. We took the famous digital leap. The General Data Protection Regulation had been entered in application in 2018 and our staff was educated about it just before the society got shut down. We knew better now what was aloud and what wasn’t. With the help of this new regulation we started to develop our work further. We learned to use Teams to keep up the peer support groups even though it required the use of customers personal data. We learned how to send encrypted emails for this reason. A small thing, many would say, but an eye opening moment for our workers. We dared to set up WhatsApp-groups among peers for example after a rehabilitation course. Now they could stay in touch and continue changing thoughts even tough the course had ended. Before Covid we thought all the virtual ways of keeping touch were far too risky from the data protection point of view. This almost makes me laugh now.
So we weren’t as strict anymore. We saw possibilities there where we saw risks before. I’d say the Covid pandemic pushed us into modern times. Not bad! The key to staying reliable in the eyes of the customers is to tell them very openly why we need his or her’s name, email address or telephone number and for what reason and how we are going to use it. Nowadays people are used to share their personal data quite easily and we learned that situation with our customers was no different. When it comes to our services it’s always customer’s decision how private he or she want’s to be and that is the principle we respect. In order to get certain services some people are ready to share something private, others are not. And this is the fact that we keep in mind when we develop our services for the future.
Something good, something bad
From a broad perspective the development of digitalization is the way of the future and it can not be stopped. There will be major chances ahead of us for example in the way we work, handle our everyday routines and keep up our social lives. I myself enjoy already the fact that I don’t have to visit an office every time I have to deal with bank affairs or travel 140 kilometers from Joensuu to Kuopio to attend a lecture. I also enjoy the few mornings every now and then when instead of driving to work I can stay home and work remotely. Different digital platforms make everyday life much more easier. From a global point of view the world is getting smaller all the time. We now have access to almost everywhere and everything via Internet, even tough one must be aware of the amount of the misinformation all the time. I was born in 1978 and have seen the big change that has happened over the years. The change continues and I see it mostly as a positive thing.
As the digitalization develops further there are a few things that we should keep in mind. There will always be those who try to benefit from it at the expense of others. One’s own responsibility in use of digital platforms and different apps is vital. We, as citizens, should be able to have all the information we need to make good decisions for example about the sites we visit or apps we give rights to use our personal data. I claim that we browse websites and load apps much too carelessly without even thinking who is behind them and what is done with the given information. I know I don’t understand this bigger picture well enough, yet. The law legislators and decision makers have a great responsibility to monitor the ongoing situation and act accordingly. I think the GDP regulation is a fairly good attempt to protect individuals from “digithieves”, but much more work must be done before we can say that every aspect of the subject have been considered properly. Somehow I have the feeling that the “bad guys” are always a bit a head of us. Maybe some day things turn around as we learn more about the possibilities on digitalization.
Self evaluation
This first assignment made me look at the digitalization from a wider point of view. It was interesting to here all the experts talk about their field and the future possibilities. Although some of the orientation videos made me wonder if we are already living the future they presented, because the material for some parts was a bit old. Non the less, it came very clear that developing the new way of living is progressing. I believe that there is a lot of many interesting inventions coming up as we grow older!
The blogs I commented:
It’s inspiring to hear about how a healthcare organization was able to adapt and evolve their privacy policies in the face of the COVID-19 pandemic and the challenges that come with digitalization.
I particularly appreciated the Marjo’s openness about their organization’s evolving attitudes towards data privacy, and how they were able to find a balance between protecting their customers’ privacy and using technology to provide more comprehensive and convenient support. Her article touched on some important considerations that come with digitalization, such as data security and individual responsibility for protecting personal information.
Overall, I found the article to be well-written and informative, and I think it’s a great read for anyone who is interested in the intersection of healthcare, technology, and privacy. Thanks for sharing!
I did choose your blog because of actually most probably having used your associations services.
I too liked the way you openly wrote about the learning curve of your organization. And I can relate to the thought of being too cautious rather than courageous. It made me think bag to the time when I was working for a mid size company that did not allow any remote work and then the pandemic hit. You can imagine the chaos no one knowing how to work remote…
I also think the same way as you: how big IS the BIG picture that we should even understand?! Your brave writing how some of the videos were a bit ‘odd’ caught my eye – I wrote in my own blog that some of the videos went over my head. But I believe not all have to understand to the detail, as long as we understand like your write that the development is a continuous fact and that development will progress.
(personally my sincere thanks to you on the valuable work you do 🙂 )
I enjoyed reading Marjo’s insights about data collecting in her workplace. I like that she mentioned that we need to start looking at the things in a different way and to understand what means today’s data collection compared with the old times.
It was interesting to read that at her workplace they gives freedom to customers to choose how private they want to go. Sometimes I encounter some page that I cannot choose what data should be collected from me and what not. I always try to avoid those pages which are not offering me freedom of choice.
It was an interesting post. Marjo grasped useful information about digitalization and digital platforms and I agree with Marjo that GDPR came into effect to protect us and our personal information from digital threats and thieves. We need to use data collection wisely and do our best to protect our customers and ourselves by creating in our working places a robust framework to ensure that digital data are safe and secure.
Thanks for sharing, Marjo!