• 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.

  • 05/20/2015

    The design, conduct, and successful execution of a clinical trial depend on the input of a multidisciplinary team of scientists, clinicians, contract research organizations (CROs), regulators, and pharmaceutical executives. However, the one group on whom the entire endeavor relies is often missing from the table: patients.

  • 04/09/2015

    The past few years have seen the launch of a variety of consumer devices (including smartphones) that allow users to measure their activity, steps, sleep, stress, and other vital signs. People living with chronic health conditions may have different goals, challenges, and constraints using these devices, but may well have the greatest opportunity to benefit by better managing their conditions. This editorial explores the opportunities and pitfalls that such monitoring may present to patients and other stakeholders.

  • 02/06/2015

    While agencies such as PCORI and the FDA are increasingly incorporating patients as partners and decision-makers in prioritizing and providing input to their work, the pharmaceutical sector lags significantly behind. In this comment from PatientsLikeMe and Novartis, the authors call for increased patient participation in earlier phases of drug development to guide innovation.

  • 12/09/2014

    Using a cohort of 513 members of the PatientsLikeMe MS community, a team of researchers identified significant worsening of symptoms associated with menopause, particularly for those women who had undergone surgical menopause or were younger at the onset of menopause. Use of the MS Rating Scale, Revised (MSRS-R) helped to identify MS symptoms such as vision issues and arm function that do not overlap with symptoms of menopause.