The Pew Research Center released a report today on people living with chronic conditions: The Diagnosis Difference.
Policy makers, patient advocates, entrepreneurs, investors, clinicians — all health care stakeholders — can use the data to map the current landscape. There are still barren patches, where people remain offline and cut off from the resources and tools. But there are lush valleys, too, where engagement and change is happening.
I see e-patients as the guides to those valleys since unless you are living with chronic conditions — or love someone who is — you don’t see that side of the internet. So here’s my request: provide your evidence. Show what you have learned.
First, a quick summary of the report:
1. 45% of U.S. adults have a chronic condition (For some, that’s a revelation and there is still a considerable distance to go before that reality is widely known. For you, that’s not the news. That’s just proof that we have a sample that matches the CDC’s estimate and you can therefore trust the data.)
2. 72% of adults with chronic conditions have internet access, compared with 89% of U.S. adults who report no conditions. There are digital divide implications to this because having a chronic disease is an independent factor in predicting if someone has access — apart from things like age, income, and educational attainment.
4. Self-tracking is a massive activity, particularly for people living with 2 or more chronic conditions, and this group is more likely to use formal means, not just tracking in their heads as many “well” trackers do. For example, 41% of health trackers who report having one or more chronic conditions use pencil and paper and 14% of this group uses a medical device such as a glucometer.
5. Living with a chronic condition has an independent, significant effect on behaviors that are often described as signs of consumer health engagement, like reading up on drug safety, medical treatments, or delivery-of-care reviews. Internet users living with chronic conditions are more likely than others to read or watch someone else’s commentary or personal experience about health or medical issues online.
I want to stop a moment and give some examples of what that might look like.
- Someone living with cancer might follow Lisa Bonchek Adams’s blog, learning about how to prepare for having a port placed.
- Someone living with diabetes might check out Diabetes Mine to learn how other PWDs (people with diabetes) rank tech tools and quality of life measures.
- Someone living with a heart condition might read Carolyn Thomas’s blog to gain reassurance that their post-diagnosis PTSD is not in their head.
- Someone living with a lung condition might learn from Propeller Health about why they, in particular, should get a flu shot.
- Someone living with high blood pressure might search Inspire.com for insights on how to keep it under control.
And now we come to the category that personally means the most to me since I’ve spent time in rare disease communities: the 16% of U.S. adults who are living with “other conditions,” like rheumatoid arthritis, epilepsy, or fibromyalgia (to name a very few of thousands). They are hardly ever in the mainstream spotlight. They may have awareness days or weeks or months that their communities honor, but you won’t see the National Football League wearing their colors.
The internet is their spotlight. A blog, a hashtag, a YouTube channel, or a Facebook group can be their lifeline. Yes, they consult clinicians like everyone else, but those who are online know that the path to health — for them — is often found in the advice shared by someone like them or the person they are caring for. The feeding tip that will help their baby get the nutrients she needs to grow. The heating-pad tip that will ease their painsomnia.
As I wrote at the top, unless you are living with chronic conditions — or love someone who is — you don’t see that side of the internet. So let’s open up the landscape.
Please post in the comments what you have learned online from a fellow spoonie, from a fellow caregiver, from a fellow traveler along the path to health. What would you tell someone just diagnosed with your condition to do, especially in tapping into the resources available online? When someone asks you, maybe over Thanksgiving, about why you spend time online, what will you say? Post it here. Links to blogs, videos, tweets — all are welcome.