14 posts from December, 2016

Meet John from the PatientsLikeMe Team of Advisors

Posted December 15th, 2016 by

Have you met John (JohnJFB126)? He’s another member of the 2016-2017 Team of Advisors.  John is a musician, husband and father of four. He’s also living with MS.

For John, living with an “invisible” disease is challenging, and he hopes for more compassion and understanding from others in the future. Here, John shares how he finds critical support in the PatientsLikeMe community: “It reinforces that I am not alone.”

What gives you the greatest joy and puts a smile on your face?

What gives me the greatest joy and puts a smile on my face is knowing that I helped someone.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

The greatest obstacle living with this condition is its, oftentimes, invisibility. Especially when compared with other chronic and disabling conditions. Societal shifts need to occur resulting in more a compassionate or understanding of these challenges are a more concise, comprehensive overview of the disease and how it truly is idiosyncratic.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

I have described this condition by comparing it to a frayed electrical cord with the inability to properly transmit the energy required to execute a function. Or, think of having MS as your computer’s hard drive sending a program execution but due to corrupt transmission lines/data paths, it needs to take additional time to map an alternate route to obtain the information and/or activate the desired program/effect.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

One piece of advice I would offer to someone newly diagnosed with a chronic condition is: If you’ve been diagnosed with a chronic disease, it’s chronic and not necessarily fatal. Learn as much about the condition and include at least one person in this learning to serve as a buddy and/or support.

How important has it been to you to find other people with your condition who understand what you’re going through?

It has been incredibly important to me to find others living with the condition and who may be able to relate to what I’m going through. Their insights, struggles and successes have proven to be invaluable; it reinforces that I am not alone.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

I have often had to advocate for myself with my insurance providers; needing to articulate the need for coverage of a procedure or medication as those items were critical to my ongoing care and health stability.

What made you want to join the PatientsLikeMe Team of Advisors?

I see the opportunity to join the PatientsLikeMe Team of Advisors as the chance to learn, give, and make a difference in the lives of individuals around the globe!

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

The PatientsLikeMe community has been a source of reference, strength, and encouragement for me as I cope with the diagnosis given me.

If given the opportunity to participate in efforts to change something which would transform how the current healthcare system is implemented and designed, what would it be?

I would work collaboratively with government (legislators/representatives), pharmaceutical and insurance companies and the medical community to transform methods for the delivery of care to persons with chronic disease diagnoses and other long term health illnesses. The goal being to streamline, reduce the need for repeated/duplicative procedures, create a system that “speaks the same language” across all platforms, and delivers timely services to each patient (“tailor made” care).

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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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