BackgroundPatientsLikeMe 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?”ObjectiveUsing 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.MethodsAlmost 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).ResultsComplete 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.ConclusionsWe 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.

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PURPOSE An isolated focus on 1 disease at a time is insufficient to generate the scientific evidence needed to improve the health of persons living with more than 1 chronic condition. This article explores how to bring context into research efforts to improve the health of persons living with multiple chronic conditions (MCC).METHODS Forty-five experts, including persons with MCC, family and friend caregivers, researchers, policy makers, funders, and clinicians met to critically consider 4 aspects of incorporating context into research on MCC: key contextual factors, needed research, essential research methods for understanding important contextual factors, and necessary partnerships for catalyzing collaborative action in conducting and applying research.RESULTS Key contextual factors involve complementary perspectives across multiple levels: public policy, community, health care systems, family, and person, as well as the cellular and molecular levels where most research currently is focused. Needed research involves moving from a disease focus toward a person-driven, goal-directed research agenda. Relevant research methods are participatory, flexible, multilevel, quantitative and qualitative, conducive to longitudinal dynamic measurement from diverse data sources, sufficiently detailed to consider what works for whom in which situation, and generative of ongoing communities of learning, living and practice. Important partnerships for collaborative action include cooperation among members of the research enterprise, health care providers, community-based support, persons with MCC and their family and friend caregivers, policy makers, and payers, including government, public health, philanthropic organizations, and the business community.CONCLUSION Consistent attention to contextual factors is needed to enhance health research for persons with MCC. Rigorous, integrated, participatory, multimethod approaches to generate new knowledge and diverse partnerships can be used to increase the relevance of research to make health care more sustainable, safe, equitable and effective, to reduce suffering, and to improve quality of life. INTRODUCTIONM ore than 1 in 4 Americans lives with the burden of more than 1 ongoing health condition, [1][2][3] and the number of persons living with multiple chronic health conditions is growing dramatically. 2,4 Medical costs for persons with chronic illnesses account for 75% of US health care spending, 4 and more than 90% of the Medicare spending on older adults is devoted to persons suffering from multiple chronic conditions (MCC). 5 This heavy expenditure has not yielded the desired increase in quality of life for those affected. 4 A strategic framework of the Department of Health and Human Services (DHHS) 6 and multiple proposals and programs from the private sector highlight the growing concern about persons living with MCC. 261Current health care and research approaches are largely mismatched to the challenge of persons living with MCC. Both health care and research are p...

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Background Evaluating a new use for an existing drug can be expensive and time consuming. Providers and patients must all too often rely upon their own individual-level experience to inform clinical practice, which generates only anecdotal and unstructured data. While academic-led clinical trials are occasionally conducted to test off-label uses of drugs with expired patents, this is relatively rare. In this work, we explored how a patient-centered online research platform could supplement traditional trials to create a richer understanding of medical products postmarket by efficiently aggregating structured patient-reported data. PatientsLikeMe is a tool for patients, researchers, and caregivers (currently 82,000 members across 11 condition-based communities) that helps users make treatment decisions, manage symptoms, and improve outcomes. Members enter demographic information, longitudinal treatment, symptoms, outcome data, and treatment evaluations. These are reflected back as longitudinal health profiles and aggregated reports. Over the last 3 years, patients have entered treatment histories and evaluations on thousands of medical products. These data may aid in evaluating the effectiveness and safety of some treatments more efficiently and over a longer period of time course than is feasible through traditional trials.Objective The objective of our study was to examine the illustrative cases of amitriptyline and modafinil – drugs commonly used off-label.Methods We analyzed patient-reported treatment histories and drug evaluations for each drug, examining prevalence, treatment purpose, and evaluations of effectiveness, side effects, and burden.Results There were 1948 treatment histories for modafinil and 1394 treatment reports for amitriptyline reported across five PatientsLikeMe communities (multiple sclerosis, Parkinson's disease, mood conditions, fibromyalgia/chronic fatigue syndrome, and amyotrophic lateral sclerosis). In these reports, the majority of members reported taking the drug for off-label uses. Only 34 of the 1755 (1%) reporting purpose used modafinil for an approved purpose (narcolepsy or sleep apnea). Only 104 out of 1197 members (9%) reported taking amitriptyline for its approved indication, depression. Members taking amitriptyline for off-label purposes rated the drug as more effective than those who were taking it for its approved indication. While dry mouth is a commonly reported side effect of amitriptyline for most patients, 88 of 220 (40%) of people with amyotrophic lateral sclerosis on the drug reported taking advantage of this side effect to treat their symptom of excess saliva.Conclusions Patient-reported outcomes, like those entered within PatientsLikeMe, offer a unique real-time approach to understand utilization and performance of treatments across many conditions. These patient-reported data can provide a new source of evidence about secondary uses and potentially identify targets for treatments to be studied systematically in traditional efficacy trials.

The Patient-Reported Outcomes

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1 interactions with health professionals and providing feedback that strengthens the relationship and their mutual understanding of the patient's needs and how they may best be addressed. Strong primary care, the care setting focused on in this paper, is critical to achieving better patient outcomes, especially as the prevalence of multiple chronic health conditions increases (AHRQ, 2014a). More than 75 percent of U.S. health care spending is devoted to treating persons with chronic conditions (CDC, 2009). Of course, specialists and subspecialists also play very important roles. The complexity of care and services often required today requires health professionals across the system to work with people in a coordinated, collaborative way and to consider the whole person-not just the condition or array of conditions that a person might have (Bodenheimer et al., 2002). All patients bring unique expertise regarding their preferences, skills, knowledge, and experiences into a potential relationship with a health care team. Patients-and, often, their families and caregivers-live with their conditions and symptoms 24 hours a day, 7 days a week. Patients are experts in knowing how they feel from moment to moment and day to day. However, not all patients are well informed about their medical conditions and how best to manage them (Fagerlin et al., 2010). Relatively few come to medical encounters with the same technical skills, clinical knowledge, and detailed understanding of the health care system that most clinicians have. Some patients prefer to be involved at a more detailed level, others less so (Alston et al., 2012). But many patients and family members have acquired, and many more are capable of developing, considerable knowledge, skills, and confidence in decision making that could influence their outcomes positively-especially those outcomes that matter most to them. Only recently, with increased attention on patient-centered care at the practice level, has it become evident that a large percentage of patients who have personal physicians and, especially minorities, do not have an effective health care team (Beal et al., 2007). When people have a personal physician and an effective practice team, their outcomes are better (Beal et al., 2007; Havyer et al., 2014). There is still much to learn about the practical realities of patients becoming true partners in their care, and the most effective teachers will be patients themselves. When patients and clinicians have an effective partnership, the relationship becomes more fluid. It transcends the traditional roles of learner and teacher, leader and follower. Valid, ongoing assessments of team functioning and performance, including assessments by patients themselves, will be important to identify and illuminate team functioning and the strength of the partnership with patients, and to inform improvement efforts so that demonstrably better patient outcomes can be achieved consistently. Methods Given the scope of the project, an early decision of the authors was to divi...