40 posts tagged “patient advocacy”

Defining “good” health care: 2 new studies reveal patient perspectives

Posted 7 months ago by

Do you feel you’re getting the best possible care from your doctor? In two recent studies, PatientsLikeMe members answered this question and shared their perspectives on the health care they’re receiving. The results show that while patient opinions about care and provider performance vary according to condition, diverse patient groups agree on the top factors that define “good” care. Here’s the full scoop…

Poll results: Good care is harder to get for some conditions

Last month, 2,559 PatientsLikeMe members took part in a 6-question poll about doctor-patient relationship and what it means to get “good care.”

The results suggest that patients with certain conditions, especially those living with fibromyalgia, PTSD and MDD, are less satisfied with their care.

The poll also found that patients with these conditions are less likely to:

  • Believe their provider has fully explained treatment options. Just 47% of fibromyalgia and PTSD patients and 53% of MDD patients agree their provider has done so, compared to 63% of patients living with ALS, MS and Parkinson’s disease.

  • Report that they are receiving the best possible health care for their condition. Only 40% of fibromyalgia patients, 49% of PTSD patients and 45% of MDD patients believe they are receiving the best possible care, vs. 66% of ALS patients, 61% of MS patients, and 57% of Parkinson’s disease patients.

  • Change providers even though they think they are not receiving the best care or effective treatment. More than half of these patients (53% of PTSD and 56% of MDD and fibromyalgia patients) have stayed with a provider in this situation vs. just 31% of ALS patients and 36% of MS and Parkinson’s patients.
Why is this the case?

“A positive or negative experience with care could be provider-related, but also related to the fact that patients living with ALS, MS and Parkinson’s often have access to condition-specific specialists or centers of excellence while those living with other conditions do not,” said Sally Okun, PatientsLikeMe’s VP of Policy and Ethics. “This makes it even more important that patients advocate on their own behalf to ensure all avenues to get good care are being used.”

See the full poll results at news.patientslikeme.com.

The patient definition of “good care”

Prior to the poll, more than 200 people (including PatientsLikeMe members, clinicians, researchers and more) shared how they define good health care and what matters most to them, from taking an active role in their care to accessibility and cost. PatientsLikeMe researcher Emil says, “Now more than ever we need to pay attention to that patient role.” In this video, he breaks down the key study takeaways:

 

Are you getting the best possible care? 10 Ways to tell

Based on what the study uncovered, we turned the 10 major factors that define good health care into a check list. Speaking about the poll and the survey, Sally Okun says, “These complementary studies give a snapshot of what is most important to patients, and give patients the tools to find providers willing to meet the characteristics of good care.”

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“We are all connected”: Check out this new video starring the 2018 Team of Advisors

Posted 9 months ago by

Have you had a chance to meet the 13 members selected to join the 2018 Team of Advisors? Get a glimpse of the dynamic group in this new 2-minute video, and keep an eye on the PatientsLikeMe newsfeed and Facebook page for their individual videos and stories.

This group will be collaborating with us in the next year to offer feedback on new research and product development, to advocate on behalf of patients, and provide real-world perspectives to PatientsLikeMe and our partners.

Say hello to the team! From left to right in the screenshot above:

(Back row)

Marcia Holman (@marcia_holman), living with multiple myeloma and breast cancer

Rich Pollock (@rcpollock), living with ALS

Rosie Stambaugh (@ClairHart), living with major depressive disorder and fibromyalgia

LaKeisha Parnell (@Hope4ull2), living with epilepsy

Susan Tomasic (@SusanT318), living with rheumatoid arthritis

Kip Edwards (@Kip_Edwards), living with multiple sclerosis

Paul Tavano (@PaulT), living with ALS

Elizabeth Asdorian, (@e_sf) living with multiple sclerosis

Bernadette Mroz (@yellsea), living with Parkinson’s disease

Alysia Taylor (@stormyND), living with bipolar disorder

(Front row)

Christine Von Raesfeld (@Cvonraesfeld), living with lupus

Jeanette Alston-Watkins (@JeanetteA6872), living with lupus

Melinda Lowery (@MelindaAnn), living with rheumatoid arthritis

This group is available as a resource to the rest of the PatientsLikeMe community and you’ll be hearing more from them throughout the year. Join PatientsLikeMe today to connect with them and 600,000+ other members!

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