On paper, I am the perfect candidate for tele-health – young and IT literate, comfortable with social media and surrounded by a smart phone and tablet and laptop.
So how much do I actually use the internet to support my self-management?
I was initially reluctant about what online support and apps could offer me. My conditions were hard to measure – I didn’t have blood tests or respiration challenges. I couldn’t produce numbers and traditional “data”. Just varying levels of fatigue, other symptoms and my mood of course. But over time, I’ve realized what matters to me, and how I can use online resources to support that.
So I use a food tracking app to see what different eating patterns can help minimize the recent exacerbation of POTS that I’m experiencing. By recording what I eat and my symptoms, I not only have second thoughts about reaching for that pack of biscuits for fear of having to record it, I can really look at the possible links between foods and symptoms and modify my diet accordingly.
I use PatientsLikeMe to record side effects to medications because it is helpful for me to have a formal record. I can also look how symptoms have changed over time with the different medications I have been on. This is essentially a tracking tool for me.
But as we know, self-management isn’t just about the clinical aspects of living with a health condition. I also need to be able to manage all the other aspects of my life. I use a platform produced by Know Your Own Health for My Health My Way self-management support service in Dorset to structure my goal-setting (a key enabler of self-management ). This helps me identify what is important to me, what I am going to do as part of the goal, and think about how confident I am about completing it.
For the emotional side of things, I need to be able to share with others, access support and develop my support networks for wider problem solving, so Twitter and Skype fit the bill there. Being connected with other people who live with similar conditions or symptoms is important, and for me, that is one of the main benefits of being online.
Being able to find and understand and act on health information is part of health literacy, which is very much a part of self-management. Over time, I have grown more confident searching for health information online
The process of using these platforms and the information generated does enable me to reflect, consider and take action around my self-management.
I do use the internet to support my self-management, but the frequency of which I use these various tools is the stumbling block. A good week, and I’m too busy feeling almost ok to bother with things like this… A bad week, however, and suddenly these things become more important to me. Not using these things everyday is ok, although it took me a while to realize that! Often websites enable you to record the minutia of changes, but in reality as people with health conditions, it is for us to use in the way and frequency that most suits us.
But would I share these tracking results with my healthcare professionals and how does it fit in with the rest of my care? I once kept really detailed diary of my HR for my physio, as requested, but they only took a cursory glance at the table of data. I’ve begun to realize that there is potential for this patient-gathered data to be shared with healthcare professionals, but that in the main, it is the responsibility of the patient to distill the data into key points to share with their care team. In an ideal world, I could keep all this data in one place, and invite my various healthcare professionals to view it, but in reality at the moment, I am happy and empowered to hold, analyse and share it myself.
I think that it’s really helpful to share information that can be helpful for our healthcare professionals (in fact, its part of our responsibilities as a patient under the NHS Constitution), and in order to do that, I need to take into account how much I might want to share, the key messages I want my healthcare professional to pick up, what I want from them, and the limited time available with them.
Seeing as recording data is only the first step, and the real impact lies in what conversations and actions it stimulates, the question remains, ‘how can we get people with health conditions to feel confident in using such online resources not as a means to an end but as tool to support their wider self-management?’
For tele-health and eHealth or whatever it is going to be called next, to work, it has to be designed with patients, and fit into our everyday lives and be integrated to the rest of our healthcare services and professionals.
Also, our language needs to co-developed around this area. Someone asked me recently if I “managed my health online”? When I manage my banking online, I have nothing to do in real life. But no matter how many apps I use, I still have to take action in real life – medications, exercises, cope with challenging symptoms and emotions. As great as online tools are, they are for “supporting” my self-management, not doing it for me!
Another very valuable tool in the toolbox, but not a solution within itself.