Research

  • 12/7/16

    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.

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  • 11/7/16

    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.

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  • 9/1/16

    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

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  • 5/12/16

    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

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  • 5/7/16

    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

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  • 12/1/15

    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.

  • 8/21/15

    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.

  • 7/25/15

    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.

  • 6/17/15 3:50 pm EDT

    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.

  • 5/20/15 9:27 am EDT

    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.

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  • 4/9/15 3:57 pm EDT

    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

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  • 2/6/15 10:23 am EST

    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.

  • 12/9/14 10:29 am EST

    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.

  • 12/1/14 10:33 am EST

    In this discussion paper from the IOM’s Roundtable on Value & Science-Driven Healthcare, the authors explore how patients view their role in team-based care and explain what is needed to foster effective partnership of patients and health-care providers.

  • 7/2/14 4:01 pm EDT

    Treatment burden is the workload imposed by healthcare on patients and the effect it has on quality of life. The Treatment Burden Questionnaire (TBQ) aims to assess treatment burden in different condition and treatment contexts. We used PatientsLikeMe’s Open Research Exchange to evaluate the validity and reliability of an English version of the TBQ, a scale that was originally developed in French.

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