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      Scaling PatientsLikeMe via a “Generalized Platform” for Members with Chronic Illness: Web-Based Survey Study of Benefits Arising

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          Abstract

          Background

          Launched in 2006 for patients with amyotrophic lateral sclerosis, PatientsLikeMe is an online community offering patient-reported outcomes, symptom tracking, and social features. Every member of the site can see all the data reported by every other member, view aggregated reports, identify “patients like them,” and learn about treatment options in order to live better with their condition. In previous studies, members reported benefits such as improved condition knowledge, increased medication adherence, and better management of side effects. However, the site evolved in 2011 from condition-specific “vertical” communities consisting only of people with the same disease to a “generalized platform,” in which every patient could connect with every other patient regardless of condition and with generic, rather than condition-specific, data tools. Some, but not all, communities received further custom tracking tools.

          Objective

          We aimed to understand (1) whether members of PatientsLikeMe using the generalized platform still reported similar benefits and (2) assess factors associated with benefits, such as community customization, site use, and patient activation.

          Methods

          A cross-sectional retrospective custom survey was fielded to 377,625 members between 2016 and 2017 including the Patient Activation Measure (PAM). A benefit index was developed for comparability across conditions.

          Results

          The invitation was viewed by 26,048 members of whom 11,915 did not respond, 5091 opted out, 1591 provided partial data, and 17 were screened out. Complete responses were received from 7434 participants. Users perceived greatest benefit in understanding how their condition may affect them (4530/6770, 66.91% participants, excluding “does not apply” answers), understanding what might help them live better with their condition (4247/6750, 62.92%), which treatments were available (4143/6898, 60.06%), understanding treatment side effects (4182/6902, 60.59%), and important factors in making treatment decisions (3919/6813, 57.52%). The benefit index was 29% higher for the “most activated” patients (PAM level 4 vs PAM level 1; relative risk [RR]=1.29, P<.001), 21% higher for conditions with some community customization versus none (RR=1.21, P<.001), and 11% higher in those using the site most often versus least (RR=1.11, P<.001).

          Conclusions

          Members of the generalized platform reported a range of benefits related to improved knowledge and understanding of their condition and treatment management. Condition-specific customization may improve their experience still further. Future studies will explore longitudinal changes to patient activation.

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          Most cited references 28

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          Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers.

          Controlling costs and achieving health care quality improvements require the participation of activated and informed consumers and patients. We describe a process for conceptualizing and operationalizing what it means to be "activated" and delineate the process we used to develop a measure for assessing "activation," and the psychometric properties of that measure. We used the convergence of the findings from a national expert consensus panel and patient focus groups to define the concept and identify the domains of activation. These domains were operationalized by constructing a large item pool. Items were pilot-tested and initial psychometric analysis performed using Rasch methodology. The third stage refined and extended the measure. The fourth stage used a national probability sample to assess the measure's psychometric performance overall and within different subpopulations. Convenience samples of patients with and without chronic illness, and a national probability sample (N=1,515) are included at different stages in the research. The Patient Activation Measure is a valid, highly reliable, unidimensional, probabilistic Guttman-like scale that reflects a developmental model of activation. Activation appears to involve four stages: (1) believing the patient role is important, (2) having the confidence and knowledge necessary to take action, (3) actually taking action to maintain and improve one's health, and (4) staying the course even under stress. The measure has good psychometric properties indicating that it can be used at the individual patient level to tailor intervention and assess changes.
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            Improving the Quality of Web Surveys: The Checklist for Reporting Results of Internet E-Surveys (CHERRIES)

            Analogous to checklists of recommendations such as the CONSORT statement (for randomized trials), or the QUORUM statement (for systematic reviews), which are designed to ensure the quality of reports in the medical literature, a checklist of recommendations for authors is being presented by the Journal of Medical Internet Research (JMIR) in an effort to ensure complete descriptions of Web-based surveys. Papers on Web-based surveys reported according to the CHERRIES statement will give readers a better understanding of the sample (self-)selection and its possible differences from a “representative” sample. It is hoped that author adherence to the checklist will increase the usefulness of such reports.
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              The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III).

              The ALS Functional Rating Scale (ALSFRS) is a validated rating instrument for monitoring the progression of disability in patients with amyotrophic lateral sclerosis (ALS). One weakness of the ALSFRS as originally designed was that it granted disproportionate weighting to limb and bulbar, as compared to respiratory, dysfunction. We have now validated a revised version of the ALSFRS, which incorporates additional assessments of dyspnea, orthopnea, and the need for ventilatory support. The Revised ALSFRS (ALSFRS-R) retains the properties of the original scale and shows strong internal consistency and construct validity. ALSFRS-R scores correlate significantly with quality of life as measured by the Sickness Impact Profile, indicating that the quality of function is a strong determinant of quality of life in ALS.
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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J. Med. Internet Res
                JMIR
                Journal of Medical Internet Research
                JMIR Publications (Toronto, Canada )
                1439-4456
                1438-8871
                May 2018
                07 May 2018
                : 20
                : 5
                Affiliations
                1 PatientsLikeMe Cambridge, MA United States
                2 AstraZeneca UK Ltd Luton United Kingdom
                Author notes
                Corresponding Author: Paul Wicks pwicks@ 123456patientslikeme.com
                Article
                v20i5e175
                10.2196/jmir.9909
                5962830
                29735472
                ©Paul Wicks, Eileen Mack Thorley, Kristina Simacek, Christopher Curran, Cathy Emmas. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 07.05.2018.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

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