Wednesday, June 29, 2016
There's a lot of talk and concern about patient engagement, and it runs the full spectrum, from doctors exasperated with non-compliant patients... to doctors overloaded with questions from patients enthusiastic about research... to patients overwhelmed by life, let alone all of the life-altering aspects of illness... to patients who've asked enough questions and read enough medical journals that they really should be invited to sit on research teams...
The world is a messy place. And thus, so is medicine.
What seems to be a big gap, is that so much of 'patient engagement' assumes that 'patients' are just that -- one big group of people interacting with the medical system, who should be expected to act the same way if they are 'engaged'.
I posit that some enterprising psychologist/psychologist/neuropsych out there could make millions and win speaking invites with a bestseller version of Love Languages for Patient Types. (Which of course I'd love to collaborate on -- KB, you know how to reach me ; )
And of course I have a personal theory of what they are but since I have no formal training beyond Psych 101, I thought I'd satisfy my curiosity with an incredibly informal, unscientific, assuredly flawed survey.
The biggest flaw, of course, is that it samples internet-savvy people who know about this blog. So.. mostly chronic illness patients who are already engaged enough to be on the internet looking for those in similar situations. Also: my dad.
So it isn't really asking the question of: does a personality type make a person more or less engaged in their healthcare.
But more a question of: does personality type lend itself to different types of engagement. (To which I'd hypothesize: Obviously.)
I mean, there's nothing I'd like better than to conduct all communication and test results and everything over email. But there are probably weird people out there who would actually like to talk to a person on the phone. So... if an office only calls people and I never pick up the phone, they are going to think I'm not 'engaged'. When really, I just hate talking on the phone and if you would just send me a text reminder about my next appointment and add my test results directly to a database I can pair with my fitness tracking data that would be awesome.
And far beyond communication styles, there's treatment plans and drug options and all the rest of it. One patient might thrive with a fitness program centered around goal-setting activities. One might balk at everything you suggest until a personal friend personally invites them to a group class.
And when faced with an illness, some patients need information. Some need community. Some thrive in busy offices where they can talk with people in the waiting room... Some (read: me) would jump through any hoop you created if you'd please just turn off the TV and encourage everyone to sit in silence. Okay, they can whisper if they must.
Anywho. I'm just saying: people are different.
Of course, personality is just the tip of the iceberg.
There are tons of factors affecting patient engagement -- length of time they've been sick, education, geography, family support.... This survey controls for none of those. It's just a survey. Because I'm curious.
I expect the main outcome will be that I will discover how poorly I've worded the questions and answers. But on the upside, I might learn something for next time. If I decide to do it again.
In any event, here it is.
BTW: I expect to gather and summarize results (if there are any) early August. And feedback is appreciated and will be taken into consideration. Thanks!
Monday, June 27, 2016
Friday, June 24, 2016
Today's Friday Five is brought to you by the letter W.
- Grassy Creek Vineyard I've been wanting to visit this place forever, and am determined to make it happen in the next couple weeks. Stay tuned.
- Bright Cellars will match you to wine based on a short personality'quiz. How it Works
- Bottle Shock The not entirely true-to-history account of the turning point for California wines: The blind tasting where they beat the French.
- A Good Year Busy businessman inherits winery. The predictable but endearing hijinks ensue.
- The Secret of Santa Vittoria (1969) A small town in WWII Italy hides their prized wine from invading Germans [Youtube]
More Friday Fives
Thursday, June 23, 2016
A few weeks ago there were two big mountain-climbing stories in the news. One of two fun friends live-chatting their way up Everest. The other of a guy reaching the Grand Slam of mountaineering.
This post could probably have been just a mountain-climbing-themed Friday Five, but the stories reminded me of an old episode of Sports Night.
And these pieces started to say something more about life and the world and the way we make our way through it.
Sports Night: The Quality of Mercy at 29k
Aside from my crazy desire to send the characters a copy of 'When Helping Hurts' or 'Toxic Charity', I just love this episode. For so many reasons.
For all our faults, and for all the terrible things about living in a fallen world, we humans can be pretty amazing. We climb mountains. We reach out to people in need. Art. Science. Music. Math. Discovery. Adventure. Protecting and defending the weak.
There is a real danger our culture is facing -- becoming increasingly divided, angry, and toxic.
We are a world in need of hope. And lots of it. Every day. From all sorts of places. And even more than that, we need to be able to recognize goodness for what it is, and not tear it apart just in case it isn't the perfect version of goodness we think it should be.
To paraphrase the story: Reach out to people. Make real connections. As much and as often as you can.
In a world in which so much is wrong, Look at what we can do.
There's really no limit to what we can do.You know what the trick is? get in the game
I didn't know we could do that. Did you know we could do that?Well when I forget, something usually reminds me.
Look at what we can do.
Youtube: Sports Night Season 1 Episode 2
Youtube: Lion King at the 2008 Tony Awards
The last time I was home, I picked up a magazine from the study, and found a wonderful interview with Edmund Hillary. (For the record, it still lives where I found it. It has not been pilfered, though I admit I was tempted.)
In it, he talked about how his life unfolded. The challenges he'd taken on, and all the fear, work, and basic ordinary miserable discomfort of doing incredible things.
Most of all, I loved this:
When I was 50 years old, I actually decided to draw up a list of half a dozen things that I really hadn't done very well, and I was going to make efforts to improve.
Mostly adventurous activities I wanted to do in the Himalayas, in Antarctica. I was successful, actually, on all the projects. Even when you're 50 you can make the effort to improve your standards.And this:
I didn't visualize myself becoming a renowned mountaineer. It happened gradually.
I'm inclined to think that happens to a lot of people. Very few suddenly decide they're going to be a world champion at something.
Time Magazine: Greatest Adventurers of All Time
The Cory Richards-Adrian Ballinger Attempt to Summit Everest Without Supplemental Oxygen (Extra Points for Snapchatting the Highlights)
I loved the interviews because of their sense of humor and friendship.
But I think their story is made more powerful by the fact that one was not able to reach the summit.
The decision to turn around, being able to see the summit and the breaking point and make the difficult choice. Getting so close to the finish line and then being forced home. And now, getting ready to find another mountain and do it all again.
At summer camp, if a camper was not able to achieve the rank they were trying for, they received the rank of Trekker, and it was an acknowledgement of the hard work, perseverance, and lessons learned in the attempt.
I have the ridiculous feeling that someone should send Adrian a light blue honor band. But then that's girl's camp, and I'm not sure what secret stuff went on at boys camp when the guys didn't make Little Chief.
They also talk about the reality of climbing a mountain that big. Not an adrenaline-fueled sprint, but a marathon of preparation and work.
CBS Morning News: Interview with the climbers
Colin Brady's 7/2 Summit Record
7 mountains, 2 poles. In 139 days.
Driven in part by the need to push through an accident in 2008 left 25% of his body burned.
The pain he endured through his recovery, he says, taught him something about himself. Pushing his body to its limits gave him a sense of accomplishment like nothing else.
CBS Sunday Morning: Colin Brady's Grand Slam
Incredible achievements. But more importantly: incredible attempts.
The world is a mess. We are a mess. But there is also hope and goodness and strength of spirit. And these should not be so easily discarded.
Look at what we can do.
Monday, June 20, 2016
The world is upside down.
Be the light in the cracks
Be the one that's mending the camel's back
Slow to anger and quick to laugh
Be more heart and less attack
Need to Breathe
More Heart Less Attack
More Music Mondays
Monday, June 13, 2016
Friday, June 10, 2016
Big sky, bright blue and green days... June is summer, and summer wants its own treats.
The Friday Five Summer Treats
One plum is always enough, but I always doubt this and go crazy with the stone fruit anyways. So. Good.
2. Girly summer drinks.
HT had this Prosecco on sale and even though I am a lightweight and could only have a couple glasses over a couple days before it went flat, I couldn't resist.
3. My new favorite apples
Apples may be fall fruits but it is a universal truth that all fruit is for summer. And these are from New Zealand, so reverse the seasons, and the math works out. I think. In any event, I'm officially declaring Smittens the new Honey Crisps. (Full disclosure: the apps pictured were my old faves, Gala.)
4. Summer Reading
My dear aunt turned me on to the Spellman series, and I think it might deserve a re-read this summer...
5. Porch Rocking
Every since my summer camp days, summer in North Carolina has been synonymous with front porch rocking. I have patio furniture that sort-of rocks but every now and then I debate a change to hammock or legitimate rocker...
What are some of your summer favorites?
More Friday Fives
Monday, June 6, 2016
The Music Scout sent in this followup to the last Tom Petty post, proving that the Youtube Music Time Machine is the best thing ever about living in the 21st century.
This really is the guaranteed perfect time to be alive. Air conditioning, the internet, and robots haven't taken over the world yet. I feel sorry for all other generations.
1978, in the last days of Winterland
Setlist (stolen from the comments):
0:00:00 - Surrender
0:03:07 - Anything That's Rock 'N' Roll
0:06:50 - Fooled Again (I Don't Like It)
0:13:33 - Casadega
0:19:11 - I Need To Know
0:21:41 - Take a bow, Phil
0:23:07 - Refugee
0:27:12 - Dark End Of The Street
0:36:08 - Listen To Her Heart
0:39:19 - You're Gonna Get It
0:43:52 - Mystery Man
0:47:20 - American Girl
0:52:08 - Breakdown
0:59:18 - Stranger In The Night
1:03:21 - Too Much Ain't Enough
1:08:57 - Shout
1:19:06 - I Fought The Law
1:21:57 - Any Way You Want It
1:26:35 - Even The Losers
Refugee, especially, has a very different feel to it. It's one of his songs that I really don't enjoy when it comes on the radio, and the fact that I don't hate this version opens up all sorts of questions. But mostly, in the words of the Florida Wildcat: "Wow".
More Music Mondays
Thursday, June 2, 2016
Just a quick mid-week post for an exciting (to me) announcement:
Abridged: the blog has officially joined the Chronic Illness Bloggers Network.
The network is a consortium of bloggers writing about all sorts of life-stuff while dealing with all sorts of different illnesses.
And it seeks to connect bloggers in a way that provides mutual support and encouragement.
Bloggers connect, promote, and share posts through Pinterest, Facebook, and Twitter.
And the network can also connect them with sponsorship opportunities.
Chronic Illness Bloggers Network
Big List of Blogs
I'm looking forward to discovering new blogs and connecting with others learning how to navigate life with life-altering illness!