J. Med. Internet Res. - Sharing health data for better outcomes on PatientsLikeMe.


{ health(1844) social(1437) communiti(874) }
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CKGROUND: PatientsLikeMe is an online quantitative personal research platform for patients with life-changing illnesses to share their experience using patient-reported outcomes, find other patients like them matched on demographic and clinical characteristics, and learn from the aggregated data reports of others to improve their outcomes. The goal of the website is to help patients answer the question: "Given my status, what is the best outcome I can hope to achieve, and how do I get there?"OBJECTIVE: Using a cross-sectional online survey, we sought to describe the potential benefits of PatientsLikeMe in terms of treatment decisions, symptom management, clinical management, and outcomes.METHODS: Almost 7,000 members from six PatientsLikeMe communities (amyotrophic lateral sclerosis [ALS], Multiple Sclerosis [MS], Parkinson's Disease, human immunodeficiency virus [HIV], fibromyalgia, and mood disorders) were sent a survey invitation using an internal survey tool (PatientsLikeMe Lens).RESULTS: Complete responses were received from 1323 participants (19% of invited members). Between-group demographics varied according to disease community. Users perceived the greatest benefit in learning about a symptom they had experienced; 72% (952 of 1323) rated the site "moderately" or "very helpful." Patients also found the site helpful for understanding the side effects of their treatments (n = 757, 57%). Nearly half of patients (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition. More patients found the site helpful with decisions to start a medication (n = 496, 37%) than to change a medication (n = 359, 27%), change a dosage (n = 336, 25%), or stop a medication (n = 290, 22%). Almost all participants (n = 1,249, 94%) were diagnosed when they joined the site. Most (n = 824, 62%) experienced no change in their confidence in that diagnosis or had an increased level of confidence (n = 456, 34%). Use of the site was associated with increasing levels of comfort in sharing personal health information among those who had initially been uncomfortable. Overall, 12% of patients (n = 151 of 1320) changed their physician as a result of using the site; this figure was doubled in patients with fibromyalgia (21%, n = 33 of 150). Patients reported community-specific benefits: 41% of HIV patients (n = 72 of 177) agreed they had reduced risky behaviors and 22% of mood disorders patients (n = 31 of 141) agreed they needed less inpatient care as a result of using the site. Analysis of the Web access logs showed that participants who used more features of the site (eg, posted in the online forum) perceived greater benefit.CONCLUSIONS: We have established that members of the community reported a range of benefits, and that these may be related to the extent of site use. Third party validation and longitudinal evaluation is an important next step in continuing to evaluate the potential of online data-sharing platforms.

Resumo Limpo

ckground patientslikem onlin quantit person research platform patient lifechang ill share experi use patientreport outcom find patient like match demograph clinic characterist learn aggreg data report other improv outcom goal websit help patient answer question given status best outcom can hope achiev get thereobject use crosssect onlin survey sought describ potenti benefit patientslikem term treatment decis symptom manag clinic manag outcomesmethod almost member six patientslikem communiti amyotroph later sclerosi al multipl sclerosi ms parkinson diseas human immunodefici virus hiv fibromyalgia mood disord sent survey invit use intern survey tool patientslikem lensresult complet respons receiv particip invit member betweengroup demograph vari accord diseas communiti user perceiv greatest benefit learn symptom experienc rate site moder help patient also found site help understand side effect treatment n near half patient n agre site help find anoth patient help understand like take specif treatment condit patient found site help decis start medic n chang medic n chang dosag n stop medic n almost particip n diagnos join site n experienc chang confid diagnosi increas level confid n use site associ increas level comfort share person health inform among initi uncomfort overal patient n chang physician result use site figur doubl patient fibromyalgia n patient report communityspecif benefit hiv patient n agre reduc riski behavior mood disord patient n agre need less inpati care result use site analysi web access log show particip use featur site eg post onlin forum perceiv greater benefitconclus establish member communiti report rang benefit may relat extent site use third parti valid longitudin evalu import next step continu evalu potenti onlin datashar platform

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