My mentor, friend, & fellow advocate, Casey Quinlan, had posted this article to one of her social media pages back in December a few days before Christmas. I had flagged it to read later & then realized I hadn’t actually read it. I’m glad I saved it because the timing was right for me to process it.
Chelsea, my fellow blogger buddy & friend, (who I co-host a weekly blab with) & I often find ourselves in discussions about digital health. We geek out over the latest & most interesting tech we find as we’re brainstorming solutions to make certain numbers we need to pay attention to (for ourselves or for our doctors) easier to track.
We don’t do this to replace doctors or appropriate medical care but to make things easier to keep track of. As a result, we have more educated conversations at our visits with our health professionals because we are attuned to how our bodies are behaving through the awareness we’ve gained through such tools.
I know several people in the digital health space from my past work at Medscape & then also through social media & other projects both past & present. I love picking their brains & finding out information on what might be coming down the pike. I just always found technology interesting even from very early on in my career.
I also find interesting & worthwhile companies & individuals who develop apps & devices. I enjoy it when they welcome me to provide feedback or encouragement on how useful their products are or slight tweaks that could be made to make it better.
I don’t do this for freebies or to provide endorsements, but to find tools I can use to manage my own health issues more effectively. This might also help others in a similar position so that’s why I choose to blog about it from time-to-time.
I found the article’s perspective interesting. It does raise some great food for thought. I’m a huge proponent of self-advocacy & empowerment. I have interesting & varied perspectives on these matters because of how my choices in occupation have intersected with personal experiences.
I have tried over time to link it all together & some how make sense of it all & so far have managed to do so fairly well.
I agree with much of the article has to say. I see the rub the author points out. From development aspects it is a challenge sometimes because what I want, need, & find empowering & useful may not necessarily be what others want or need (or find motivating).
I know I tend to gravitate towards companies, apps, & devices that actively welcome user feedback, suggestions, testing, & input.
I get less excited about products that are just out to push something on me or only want another sale. Or even drug companies who feel a connected device is just a thing to bundle with a medication so they focus more on a rush to market to be the first out there with it. Rather than taking the time to develop a quality device that is practical & easy to use. So it is very true — sometimes companies can be lazy & complacent in this space.
I do agree as well that too often products and services are designed & pushed to market with very little thought to a more complex end-user at points. This leads to some great ideas falling flat in the end run.
Too few companies actively engage the consumer/patient/person (whatever term you prefer) in actual design & conceptual planning of a device which is a big part of the problem (as the author astutely eludes to).
If you don’t have the community who needs your input actively involved — little wonder why it fails. I don’t think empowerment can be taught through an app per se, but there are definite pointers along an individual’s journey that can be used to harness that skill within themselves & nurture it.
I think (while there’s some debate), this is why crowdfunding of devices has been so successful as of late. They really hone in on a need or a community. They actively seek users to engage with, back & test the products, as well as invest in them.
While there are times the reliability is questionable, the utility or what it can mean to someone even for just a practical use is still important.
It is use at your own risk to a certain degree, especially if it’s not an FDA-approved device in some cases, but if it’s something that is designed (for recreational use) with a relatable purpose & the inventors rely on the community (welcoming feedback, engagement, & questions), that’s more than what most mainstream companies bother to do these days with many “approved” devices.