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Press Releases

  • 4/3/18
    With spring travel in full swing, PatientsLikeMe has published results of the first scientific study to explore whether we are more likely to cry watching a movie on a plane than on the ground. The pseudo-phenomenon is often reported by celebrities and the media and is sometimes called altitude-adjusted lachrymosity syndrome (AALS). The “No Tears in Heaven” study, published today in the scientific journal PeerJ, showsmore...
  • 3/28/18
    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 thosemore...

Research

  • 7/25/18

    Patient and public involvement in research is becoming a mainstream activity thanks to recognition by everyone in the research process from funders and regulators to conference organizers and publishers that it helps them do a better job. There is certainly a strong case for increasing the value to patients and the public from the billions spent on biomedical research. The exponential rise in research output has seen a decline in quality and mounting concern about high levels of waste, bias, inefficiency, and error.

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  • 3/22/18

    The Robert Wood Johnson Foundation (RWJF) funded PatientsLikeMe research to capture patient perspectives about and develop new ways to measure provider effectiveness in delivering health care. Previous studies on the same topic have relied on clinical and researcher input with little patient involvement. This research included several components: one study applied patient-generated health data to groups developing outcome measures; another developed a patient-generated model of good care; a third compared physician and patient perspectives on accountability.

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  • 7/14/17

    NMO (also known as Devic’s disease) is a rare disorder once thought to be a variant of multiple sclerosis (MS). In this paper we describe the patient experience of living with NMO based on data from our community on PatientsLikeMe. Median delay from symptom onset to diagnosis was about a year, with the three most frequently reported symptoms being fatigue, pain, and stiffness/spasticity. Relative to MS patients, NMO patients had more vision problem and fewer cognitive problems.

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