• 07/14/2017

    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.

  • 06/06/2017

    This paper describes the development of the Patient and Caregiver Journey Framework and related patient-informed principles for design and measurement created by PatientsLikeMe in partnership with patients and caregivers using qualitative research methods, immersive observation and directed one-on-one conversations. These tools provide a person-centric foundation upon which the knowledge and experience of patients and caregivers are collected, curated, aggregated and shared to support a data-driven learning health community continuously powered by the people and for the people.

  • 06/01/2017

    To ensure trials are truly reflective of what is meaningful to patients, patients and stakeholders should be engaged during the entire trial process—from planning the trial through conducting the trial to disseminating the results. Identifying, recruiting, training, continually engaging, and compensating an advisory committee of patients and stakeholders to serve as a resource and guide through the trial process is one way to increase the patient-centeredness of a trial.

  • 03/24/2017

    Cachexia is unintentional significant weight loss that can occur with diseases like lung cancer. In this survey, 95 PatientsLikeMe members with advanced non-small cell lung cancer were asked about hunger, weight loss, and the impacts on their lives. Patients who experienced considerable weight loss reported worse function, lower health-related quality of life, and more symptoms such as fatigue and changes in food taste than those who did not have weight loss.

  • 02/27/2017

    Developing new medicines relies on the successful completion of clinical trials, but it is difficult to recruit and retain patient volunteers. This study sought to describe drivers and barriers to trial participation, as well as condition-specific trial preferences. We found that most patients are willing to enroll, yet very few are invited. Trial participation is often burdensome, but patients are willing to help improve trial design. Researchers should allow patients to help design better trials to overcome recruitment and retention issues and hasten the development of new medicines.

  • 12/07/2016

    What does the future of medicine hold? In collaboration with BMC Medicine we asked six researchers to share their most ambitious and optimistic views of the future, grounded in the present but looking out a decade or more from now to consider what’s possible.

  • 12/07/2016

    In a study with Genentech and Stanford University Medical School, PatientsLikeMe explored patient and physician perspectives on current laboratory test reporting practices and to elicit ideas for improvement.

  • 11/07/2016

    In collaboration with UCB, PatientsLikeMe established a community for people living with seizures in January 2010 which allows members to track their seizures, medication, and quality of life. As part of the community we designed a study using validated quality of life measures to learn more about the major drivers of distress in the community. From 3,073 respondents surveyed we found a high rate of key symptoms such as memory problems, fatigue, and problems concentrating.

  • 09/01/2016

    Disease-modifying therapies in MS were for many years only available to patients as an infusion or an injection, which could be burdensome to patients who struggled with adherence and side effects. In the past few years a number of oral medications have been approved for the treatment of MS which allow patients to treat their condition with daily pills, however it remains unclear what the real-world experience of these treatments might be in comparison with results from controlled clinical trials.

  • 05/12/2016

    While data gathered on PatientsLikeMe has been used for a variety of purposes, questions remain about the quality of information gathered in this new way. Data collected online in other contexts such as online restaurant reviews may be subject to faking, so how can we be confident that patients are who they say they are? In this study we were able to link 94% of respondents to insurance claims using linking methods, thereby increasing confidence in the data through methods that maintain patient anonymity.

  • 05/07/2016

    In this site-wide survey of almost 4,000 PLM members we described some of the challenges faced by a subset of dissatisfied patients including difficulty setting treatment goals with their physician and getting enough time with their healthcare professionals. By sampling across different conditions we could also identify those conditions where patients appeared relatively disempowered such as fibromyalgia or chronic fatigue syndrome, highlighting the importance of stigma in empowerment. Many patients feel their main healthcare provider doesn't do enough to monitor their condition.

  • 12/01/2015

    Although ALS is considered an untreatable and relentlessly progressive disorder, anecdotal evidence suggests that some patients stabilize or even regain function, albeit temporarily, during the course of their disease journey. Using data from the PRO-ACT database our team identified a small subset of patients (7-25%) that did not decline over periods ranging from 6 to 18 months.

  • 08/21/2015

    Sleep disturbances are increasingly being recognized as an important comorbidity to chronic health conditions. In this study, more than 5,000 patients with a range of chronic health conditions were surveyed on their National Sleep Foundation-defined risk of early, middle, and late insomnia.

  • 07/25/2015

    The aim of this study was to develop a patient-reported hypertension instrument that measured attitudes, lifestyle behaviors, adherence, and barriers to hypertension management using patient-reported outcome data. The Open Research Exchange PRO platform was used to rapidly gather feedback during item development from 21 patients and psychometric data was collected from 360 patients in just 7 days.

  • 06/17/2015

    Veterans living with seizures are often isolated and struggle with self-management. In a six week trial of PatientsLikeMe as an intervention, a collaboration with the VA Epilepsy Centers of Excellence and UCB found a significant improvement in patient self-management and self-efficacy using validated patient-reported outcomes. Internet based psychosocial support may be a scalable approach to improving patient self-management in challenging chronic conditions.