WhatPatientsThink.com

08/18/2016

It's not the most typical thing to be thinking about during these warm - ok, hot (really, really hot) - summer days, but whether we're out on vacation with family or hoping that a cold front will sweep through our hometowns, our conditions do follow us around.

And that got us thinking that we'd never given people a chance to take our condition focused surveys directly from these this page, which was pretty dumb of us.

So here's your chance now: https://survey.zohopublic.com/zs/jbDX27. Tell us what your experience of disease or a condition is like and you could win a weekly sweepstakes award! But best of all, you'll be helping others know that their experiences are shared by others.

05/01/2016

We were thinking about the fact that while we've given away over $500 in sweepstakes prizes over the past year or so - we've never shared with our audience anything about these generous folks who've shared their experiences with us.

And so, here are some facts (and no individual information, of course!): of the more than 30 people who've received awards from us, people with arthritis have won most frequently - in fact, 20% of the time, they've won our weekly sweepstakes. But we've also awarded patients with diabetes, fibromyalgia, COPD, asthma, Crohn's, hyperthyroidism, and social anxiety disorder. Most of the winners were women and in general, they were anywhere from 45-64 years of age.

What concerns us though - and it fits with what we've seen before - is that most of these people have reported only modest satisfaction with their treatment, as in about a "three" on a scale of one to five. And that's across conditions, ages, locations, etc. It tells us that there's still so much more that patients really want from their treatment and - admittedly somewhat self-servingly, all the more reason for a site like WhatPatientsThink.com to be around, giving voice to patients.

03/21/2016

Happy spring! And with all beautiful flowers about to be covered in some late season snow, we thought it was a perfect time to dig a little into our WhatPatientsThink.com survey results. This covers a lot of different conditions: arthritis, fibromyalgia, asthma, etc.

But as you can see, we were scratching our heads a bit when we looked at various levels of satisfaction based on how long a patient has been diagnosed with a disease. As we've seen before, overall satisfaction with treatment was...well..."meh" is probably the technical term. (Joke.) That's about 3 on a scale of 1-5.

Our data shows people relatively recently diagnosed - less than five years and those diagnosed more than 25 years ago - are considerably more satisfied with their treatment than are those in the middle (between 6-25 years). 3.3 on a scale of 1-5 for the newly and long-ago diagnosed and 2.8 for those in between.

So what could be happening? We thought of a bunch of possibilities: the newly diagnosed are feeling better because they're now being treated, the long-ago diagnosed feeling better because they've long since adapted to their condition. But what about the middle group? Is their treatment really not working as well? Are other factors about their lives influencing their opinions Is it just a strange quirk of data? (We've got about the same number of respondents in each grouping.)

We're going to look some more at the specific diseases in question, what medications they're taking, and a whole bunch of other possibilities.

Any thoughts? Please chime in here or go to WhatPatientsThink.com to comment.

01/19/2016

It's been a big issue for years in healthcare: how do you actually "measure" the outcomes of medical care that's been provided? We take a look at this issue and provide our own "history of outcomes" in today's post.

01/11/2016

Patients report very low levels of satisfaction with the control and treatment of their chronic conditions. In an ongoing survey that we here at WhatPatientsThink.com are doing on patients with chronic conditions, we found that on a scale of 1-5 - with a 5 meaning "very satisfied" - patients reported an average score of 2.3. In other words: Ouch!

This survey covers 13 different conditions from Arthritis to Thyroid problems. Now the good news is that it's early: these results are from a few dozen respondents. But the bad news is that there was little difference in the level of satisfaction with treatment irrespective of condition.

You'd think that the healthcare industry would have done better by now.

We're always looking for more input so please feel free to visit us at http://www.whatpatientsthink.com/surveys and add your voice to our research!

01/01/2016

Happy New Year and here's to a healthy 2016! We hope you'll check us out and see what WhatPatientsThink.com are up to this year. http://ow.ly/WwdJi

Happy New Year to everyone and wishing everyone good health in 2016! We’re very excited to let you know that WhatPatientsThink.com is back and...

08/31/2015

So much for resolutions to post more frequently - unless close to four months between posts is considered OK - but the reason we wanted to write today was to take note of the sad news of the death of Dr. Oliver Sacks over the weekend.

For those of you who don't know, Dr. Sacks was a neurologist and best-selling author of many books focused on patients with unusual maladies. His book "Awakenings" was made into a movie with Robin Williams and Robert DeNiro that detailed his use of L-Dopa to help patients with sleeping sickness. But he wrote many other wonderful books, with titles such as "The Man Who Mistook His Wife for a Hat" and "An Anthropologist on Mars," as well as introduced us to the remarkable Temple Grandin, a woman with autism who helped design new, more humane slaughterhouses (no joke!) because of her ability to empathize with cattle.

If you haven't read Dr. Sacks, we urge you to do so as you'll find a writer and a physician who displays such understanding and empathy for his patients, without any indication of condescension or a patronizing attitude. Instead you'll see someone who embodies respect, warmth, and understanding.

The New York Times has a fine article here: http://goo.gl/Ug31vr. Search a bit more and you'll also fine an obituary: http://goo.gl/epYRZn. For us though, it was this quote in response to a question about how he would like to be remembered, that spoke so keenly to what we hope to achieve with WhatPatientsThink.com:

“I would like it to be thought that I had listened carefully to what patients and others have told me,” he said, “that I’ve tried to imagine what it was like for them, and that I tried to convey this."

We couldn't imagine a better statement for what we'd like to do, as well. RIP, Dr. Sacks.

Whether writing about his patients, his love of chemistry or the power of music, Dr. Sacks leapfrogged among disciplines, shedding light on the connections between science and art.

05/16/2015

Well, it's been an absurdly long time since we've posted an update on what we're doing. (Our apologies for that.) But we've been quite busy over the last several months.

1) We've now had feedback from over 700 patients with over a dozen conditions who've honored us with their insights about their conditions! Thanks to all those who've contributed.
2) We've awarded over $300 in Amazon Gift cards to more than 20 of those patients who've shared their experiences with us.
3) And we're now fielding a survey asking our friends what more they'd like to see from WhatPatientsThink.com. If you're interested, you can take that survey at https://www.research.net/s/whatpatientsthink_whatsnextsurvey.

We're always interested in hearing what you think.

We really want to stay in touch with you and hear how things are going with you! As a way of saying "thanks for your time," we'll send you a $5 Amazon Gift Card upon completing this survey

01/26/2015

We posted a quote that we received earlier from a respondent to our diabetes survey on our website. This person encapsulated the feelings that dealing with chronic illness evokes and in some ways reflects on the true mission that we hope we're surveying: giving patients full voice. Here's the post: http://www.whatpatientsthink.com/ #!What-its-really-all-about/c1oc0/4DFE037B-E05F-4AD5-B06E-9BDBAA1594F5

We received a response to a post on Facebook the other day that we wanted to share with you: I have diabetes. Found out in 2001. I was heart broken when my do...

01/16/2015

We've taken a further look at the impact of different factors on patients taking their medicines. This time we looked at the effect of the cost of those medicines, education, and household income.

Generally, we found results that seemed pretty reasonable: better medication taking with lower out-of-pocket costs, higher educational attainment, and higher income. But there were still a few curious findings:

* If patients didn't pay anything for their medicine, their adherence was a bit lower than even if they paid as little as $5.
* The highest income group - patients with household incomes above $150K - had the lowest adherence: Only 58% said they took all their medicine.

Normal qualifications apply: small sample sizes, etc., but continues to confirm for us that adherence is something that no one has really licked.

Read the whole post here: http://goo.gl/F9Sxrj

The last time we looked at the group of 200 diabetic patients we surveyed, we’d remarked that their adherence to their medications wasn’t as good as we would’ve...

12/25/2014

We've had a chance to take a first look at the results of a survey we conducted with over 200 diabetes patients. It's an interesting mix of things - but the lede (at least for us) is that among this group of very motivated patients, medication compliance is still a pretty serious issue. Take a look at our blog post on our website for more: http://goo.gl/zhGXn0.

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