New PatientsLikeMe Studies Reveal How Patients Experience and Define “Good” Health Care

Patients living with fibromyalgia, PTSD, major depressive disorder are the least satisfied with their care, those with ALS, MS, Parkinson’s are among the most satisfied; a new checklist helps patients find providers who meet the criteria for delivering good care

CAMBRIDGE, Mass.--()--Two recent PatientsLikeMe studies have shed new light on the patient experience with health care and show that while opinions about care and provider performance vary according to condition, diverse patient groups agree on the top factors that constitute “good” care.

Results from a six-question online poll conducted in February 2018 among 2,559 PatientsLikeMe members show that patients with certain conditions, especially those living with fibromyalgia, post-traumatic stress disorder (PTSD) and major depressive disorder (MDD), are the least satisfied with their provider or care, while those with ALS, multiple sclerosis (MS) and Parkinson’s disease are among the most satisfied. In a corresponding primary study, conducted with support from the Robert Wood Johnson Foundation and completed late last year, PatientsLikeMe surveyed a diverse group of patients and health stakeholders to understand how they fundamentally defined good care, with the ultimate aim to influence ways in which provider effectiveness is measured. The primary study’s findings also generated a simple checklist for evaluating care and provider performance.

“Patients are the ultimate arbiters of health care quality because they live with their symptoms, treatments, and daily struggles all day, every day,” said PatientsLikeMe’s Vice President of Policy and Ethics Sally Okun. “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.”

The Patient Experience: Poll Results

Key findings among all poll respondents highlight contrasting care experiences based on condition. The results suggest that patients with certain conditions, especially those living with fibromyalgia, PTSD and MDD, are less likely to:

  • Believe their provider has fully explained treatment options. Half or less of the respondents living with these conditions (47 percent of fibromyalgia and PTSD patients and 53 percent of MDD patients) agree their provider has done so, compared to 63 percent 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 percent of fibromyalgia patients, 49 percent of PTSD patients and 45 percent of MDD patients believe they are receiving the best possible care, vs. 66 percent of ALS patients, 61 percent of MS patients, and 57 percent 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 percent of PTSD and 56 percent of both MDD and fibromyalgia patients) have stayed with a provider even though they do not think they are receiving the best care or treatment, vs. just 31 percent of ALS patients and 36 percent of MS and Parkinson’s patients.

“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,” Okun said. “This makes it even more important that patients advocate on their own behalf to ensure all avenues to get good care are being used.”

Full poll results are available at

Patient-Defined Good Care

The goal of the primary study was to understand what good care really looks like, and to gather core principles about care and provider performance. Researchers recruited a diverse group of PatientsLikeMe members, patients from the St. Matthews Clinic, a community clinic located in an underserved area of Baltimore, and health stakeholders, including clinicians, researchers, purchasers, and measure developers. All were asked to describe what good health care means to them. The process generated more than 1,200 statements that highlighted core concepts about good care, which were then mapped into 10 major concepts to reveal 10 questions to describe and evaluate good care:

  • Active Patient Role in Care – do you play an active role in the decision making process, and do you understand your diagnosis and your treatment options?
  • Effective Treatment Selection – do you feel that your care is thorough, safe, appropriate, and accurate?
  • Effective Care Delivery – does your provider arrive prepared for appointments, and follow-up afterwards?
  • Focus on Outcomes – does the treatment help your condition and improve your everyday life?
  • Doctor or Provider Competence – is your provider up to date and informed about your condition and treatment?
  • Individualized and Empathic Care – does your provider listen to you and seem to care about you as a person?
  • Collaborative Care – does your provider value your opinion and view you as a whole person when it comes to your care?
  • Effective Staff Communication – do your medical providers communicate well with each other?
  • Care Accessibility and Cost – do you have easy access to the office where you receive treatment, and is your care sufficiently covered by insurance and/or affordable to you?
  • Office Management – is the medical staff organized with appointments and with your insurance company?

A video recap of the study is available as is a 10-question checklist to help patients easily evaluate the quality of their own provider and care. A micro documentary about the St. Matthews Clinic tells the story of how the concepts of good care play out in an underserved community in Baltimore.

About PatientsLikeMe
PatientsLikeMe, the world’s largest personalized health network, helps people find new options for treatments, connect with others, and take action to improve their outcomes. The company has worked with every major pharmaceutical company and a range of government organizations to bring the patient voice to research, development and public policy. With more than 600,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 100 research studies. Visit us at or follow us via our blog, Twitter or Facebook.

Poll Methodology

Between February 21-23, 2018, PatientsLikeMe fielded a six-question online poll to a sample of its members. A total of 2,559 patients completed the poll, which asked original multiple choice questions and provided an open area for additional written responses. Respondents had a range of chronic or progressive medical conditions and listed their primary condition as multiple sclerosis (12%), fibromyalgia (9%), Parkinson’s disease (8%), major depressive disorder (7%), ALS (4%), bipolar disorder (4%), lupus (4%), rheumatoid arthritis (3%), PTSD (3%), type 2 diabetes (3%), among many other conditions. The mean age of respondents was 56.7 years (median was 58 years). Of 2,208 respondents who gave information on level of education (86.3% of total), 1.7% had less than a high school diploma, 10.1% had high school diplomas, 36.2% had some college, 28.7% reported a college degree, and 22.1% reported post-graduate education. Of 2,207 respondents who gave information on health insurance (86.2%), about one-third (30.6%) of patients had health insurance through their employer and one-third (33.5%) had Medicare; the rest had a mix of other health care coverage, including Medicaid, VA, military, and direct pay insurance, which includes insurance purchased from ACA exchange programs. A very small percentage (2.9%) of respondents said they had no health insurance.

PatientsLikeMe Good Care Poll Questions and Responses
Fielded February 21-23, 2018

How much do you agree or disagree with the following statements?

My provider has fully explained treatment options that offer the best chances of success in treating my condition. (N=2559)

Strongly disagree       313 (12.2%)
Disagree 430 (16.8%)
Undecided 333 (13.0%)
Agree 830 (32.4%)
Strongly agree 653 (25.5%)

My provider has sufficient knowledge and experience to treat my condition. (N=2559)

Strongly disagree       216 (8.4%)
Disagree 241 (9.4%)
Undecided 363 (14.2%)
Agree 778 (30.4%)
Strongly agree 961 (37.6%)

My provider and I are working as a team in treating my condition. (N=2559)

Strongly disagree       234 (9.1%)
Disagree 283 (11.1%)
Undecided 320 (12.5%)
Agree 880 (34.4%)
Strongly agree 842 (32.9%)

I am receiving the best possible health care for my condition. (N=2559)

Strongly disagree       285 (11.1%)
Disagree 357 (14.0%)
Undecided 557 (21.8%)
Agree 733 (28.6%)
Strongly agree 627 (24.5%)

Have you stayed with a provider even though you did not think that you were receiving the best care or effective treatment? (N=2559)

Yes       1120 (43.8%)
No 1277 (49.9%)
I don't know 162 (6.3%)

Is there anything else you'd like to add about what you consider important in good medical care? [open text; responses not included] (N=2559)


Margot Carlson Delogne, +1-781-492-1039

Release Summary

Two recent PatientsLikeMe studies have shed new light on the patient experience with health care.


Margot Carlson Delogne, +1-781-492-1039