Recent Surveys Show What Patients Really Think About Their Standard of Care

An organisation called PatientsLikeMe that helps to represent patients to governments and pharmaceutical companies has published a press release about the results of two recent studies designed to define and measure ‘good care’. The first study found that most people agree on what constitutes ‘good care’, and the second study discovered patients’ opinions about the level of care they receive are linked to which condition they have.

The first poll, which was supported by the Robert Wood Johnson Foundation, questioned a range of different healthcare stakeholders about how they defined ‘good care’. Respondents included clinicians, purchasers, researchers, and measure developers, although the primary group in the survey was patients, since, ultimately, they were considered to be the best judges of care quality. Over 1,200 statements about what should be considered ‘good care’ were collected, and it was found that most responses focused around similar factors, including the extent to which a medical provider collaborates with a patient when treating them, and if the care is affordable. From these results the researchers created ten major concepts that link to how ‘good care’ can be defined, and then wrote ten questions designed to measure the standard of care against these. A short video presentation about the study is available here. A seven minute micro-documentary exploring how these concepts of good care affect one of the groups involved in the study, St Matthews Clinic, can be found here.

The second study asked 2,559 PatientsLikeMe members six questions about the care they receive using an online poll. The results showed that people with different conditions rated their standards of care differently. The disease groups least satisfied with their care included those with post-traumatic stress disorder, major depressive disorder, and fibromyalgia. In comparison, the patients who were most satisfied with their care were those with Parkinson’s disease, amyotrophic lateral sclerosis, and multiple sclerosis. These groups were among those most likely to report that they feel they are receiving the highest standard of care for their condition, think that all their healthcare options have been explained, and switch provider when they feel that they aren’t receiving effective treatment. The full list of questions from both studies can be found here.

These studies provide useful information that can be used to improve patient care. The first study, which defined good care, is intended to improve the process of evaluating healthcare providers by making sure the standards that they are held to reflect the standards of the patients themselves. It can also be used by patients themselves as a tool to assess their own quality of care.

The second study highlights significant divisions between disease groups in quality of care. This may be partly attributed to the greater availability of specialist doctors or nurses for certain conditions, such as Parkinson’s disease, compared to diseases like major depressive disorder. However, it also highlights the need for improvements in patient care. Advocacy groups are playing an important role in bringing attention to these differences and working to improve care standards for all patients.


Anna Hewitt

Anna Hewitt

Anna is from England and recently finished her undergraduate degree. She has an interest in medicine and enjoys writing. In her spare time she likes to cook, hike, and hang out with cats.

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