7 posts tagged “patient empowerment”

The power of your data: Patient empowerment

Posted December 14th, 2016 by

We’re more than halfway through 24 Days of Giving and we’ve been sharing how patient data has the power to create better communities, better care and a better you. So, while we’re on the subject of you – let’s talk more about how patients see themselves as the captains of their own health when it comes to care. That’s right: patient empowerment.

The results of a study we did a while back with our partners at Genentech have just recently been published in a scientific journal called “The Patient – Patient-Centered Outcomes Research.” What was this study about? Simple. It was about how finding healthcare information, interacting with peers and providers and access to healthcare contribute to your sense of empowerment as a patient with a chronic condition.

More than 3,988 of you participated. What was discovered? Check out some of the top takeaways:

Empowerment comes in two kinds:

  • Positive Patient-Provider Interaction (i.e., how favorably you view the care received from your healthcare provider)
  • Knowledge and Personal Control (i.e., how well you understand, manage and control your health condition(s))

Empowerment varies:

  • The average score on “patient empowerment” (on a scale of 15 – 75) was higher among patients with primary complaint of Parkinson’s disease (average = 62) and multiple sclerosis (average = 60) than those with fibromyalgia (average = 55) and chronic fatigue syndrome (average = 55).
    • Ooof, that’s barely English. Said another way, it appears that fibromyalgia and chronic fatigue syndrome patients feel slightly less empowered than people living with Parkinson’s or MS.
  • But across all conditions, those who were older, male, more educated and insured also reported significantly greater levels of empowerment.

What’s most important to you when it comes to empowerment?

For you, it’s important to:

  • be active in treatment goal setting with providers;
  • make sure that your provider spends enough time with you answering questions;
  • make sure that you understand the treatment and diagnosis, and any materials that are given to you; and
  • learn about and understand disease warning signs/symptoms, disease progression, and available treatment options. 

Knowledge is power:

How do you learn about your condition?

  • You use health websites like WebMD and Mayo Clinic (87%), PatientsLikeMe.com (60%), books (43%), magazines (40%), and journals (36%).
  • More than half of you get health information verbally from a doctor (59%).

What do you learn about your condition?

The information you find helps you learn about…

  • Treatment options (83%)
  • Course and progression of your disease (76%)
  • Signs and symptoms (68%)
  • Cause of condition (51%)
  • Initial diagnosis (50%)
  • Health monitoring (48%)

Doctor relationships:

  • Many of you are satisfied with your access to healthcare services (64%) and your relationship with your doctor (77%).
  • The majority of you (79%) feel like you have a say in your treatment decision-making, and are satisfied with the care you receive from your doctor (73%).
  • Some of you feel that your treatment goals don’t match your doctor’s plan (34%), or that you don’t spend enough time with your primary doctor during visits (36%).

Peer support:

  • For 47% of you, friends are a source of support and help care for and manage your condition.
  • Most of you manage your condition with help from others (74%) and learn from the experiences of those who are part of online communities like PatientsLikeMe (69%).

If you were one of the many who contributed to this research – thank you. What you shared proved that the differences in empowerment levels across conditions warrant further study. That’s the power of your data in action!

 

 

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#ChatActChange: empowered to chat, act and make change – together

Posted November 17th, 2015 by

On October 28, Sally Okun, our Vice President for Advocacy, Policy and Patient Safety, participated in a Twitter chat – using the hashtag #ChatActChange – aimed at empowering people living with chronic conditions to advocate for policy change. Hosted by Diabetes Social Media Advocacy (DSMA), other chat participants included policy expert Susan Dentzer, Diabetes Hands Foundation and Novo Nordisk.

The chat generated some great conversation about what it means to be an empowered patient. 186 people joined the discussion, including patients, diabetes influencers and policy experts. 2015-2016 Team of Advisors member Christel, who is living with type 1 diabetes, took part in the chat, as did the American Diabetes Association.   

More than 500 users were reached with the #ChatActChange hashtag, and there were more than 1,154 tweets during the one-hour Twitter chat.

To check out a complete summary of the chat, take a look at this Storify. You can also contribute to the ongoing conversation on Twitter using #ChatActChange.

Let’s be empowered to chat, act and make change – together.

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