PatientsLikeMe (United States)

BackgroundChronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce.ObjectiveThe aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences.MethodsAdult members (aged ≥18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were collected prospectively through semistructured phone interviews in a subset of patients, and questions were oriented to better understand patients’ experiences with CKD and its management.ResultsThe retrospective data set included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (1217/1841, 66.11%) and most were US residents (1450/1661, 87.30%). Of the patients who reported comorbidities (n=1374), the most common were type 2 diabetes (783/1374, 56.99%), hypertension (664/1374, 48.33%), hypercholesterolemia (439/1374, 31.95%), and diabetic neuropathy (376/1374, 27.37%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (347/484, 71.7%) and pain (278/476, 58.4%). In the qualitative study, 18 eligible patients (13 females) with a median age of 60 years and who were mainly US residents were interviewed. Three key concepts were identified by patients to be important to optimal care and management: listening to patient needs, coordinating health care across providers, and managing clinical care.ConclusionsThis study provides a unique source of real-world information on the patient experience of CKD and its management by utilizing the PLM network. The results reveal the challenges these patients face living with an array of symptoms, and report key concepts identified by patients that can be used to further improve clinical care and management and inform future CKD studies.

BACKGROUND Chronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce. OBJECTIVE The aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences. METHODS Adult members (aged ≥18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were collected prospectively through semistructured phone interviews in a subset of patients, and questions were oriented to better understand patients’ experiences with CKD and its management. RESULTS The retrospective data set included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (1217/1841, 66.11%) and most were US residents (1450/1661, 87.30%). Of the patients who reported comorbidities (n=1374), the most common were type 2 diabetes (783/1374, 56.99%), hypertension (664/1374, 48.33%), hypercholesterolemia (439/1374, 31.95%), and diabetic neuropathy (376/1374, 27.37%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (347/484, 71.7%) and pain (278/476, 58.4%). In the qualitative study, 18 eligible patients (13 females) with a median age of 60 years and who were mainly US residents were interviewed. Three key concepts were identified by patients to be important to optimal care and management: listening to patient needs, coordinating health care across providers, and managing clinical care. CONCLUSIONS This study provides a unique source of real-world information on the patient experience of CKD and its management by utilizing the PLM network. The results reveal the challenges these patients face living with an array of symptoms, and report key concepts identified by patients that can be used to further improve clinical care and management and inform future CKD studies.

To compare pharmacogenetic test predictions with self-reported treatment experience and side effect tolerability among patients with depression taking psychotherapeutic medications. Subjects completed a survey recalling medication effectiveness and side effects and then underwent pharmacogenetic testing. Our 15 gene pharmacogenetic panel predicted efficacy (p < 0.001) but did not predict side effect tolerability (p = 0.70) in a group of 352 patients. The pharmacogenetic panel and reported efficacy corresponded 60% of the time and medication tolerability agreed 71% of the time. Pharmacogenetic testing may be a useful adjunct to predict efficacy of medications used to treat depression.

BACKGROUND In the United States, people with relapsing-remitting multiple sclerosis (RRMS) can face difficulty accessing disease-modifying therapies (DMTs) because of insurance, pharmacy, or provider policies. These barriers have been associated with poor adherence and negative health outcomes. OBJECTIVE The goals of this study were to describe the overall occurrence of difficulties and delays associated with gaining access to DMTs among people with RRMS, to assess DMT adherence during periods of reduced access, and to contextualize the patients’ journey from receipt of a prescription for DMT to obtaining and taking their medication when faced with access barriers. METHODS We recruited US-based adults self-reporting RRMS from a Web-based health data-sharing social network, PatientsLikeMe. Individuals were invited to complete a Web-based survey if they reported a diagnosis of RRMS and were prescribed a DMT for MS. Follow-up phone interviews were conducted with 10 respondents who reported experiencing an MS-related relapse during the time they had experienced challenges accessing DMTs. RESULTS Among 507 survey completers, nearly half were either currently experiencing an issue related to DMT assess or had difficulty accessing a DMT in the past (233/507, 46.0%). The most frequently reported reasons for access difficulty were authorization requirements by insurance companies (past issues: 78/182, 42.9%; current issues: 9/42, 21%) and high out-of-pocket costs (past issues: 54/182, 29.7%; current issues: 13/42, 31%). About half (20/39, 51%) of participants with current access issues and over a third (68/165, 41.2%) of those with past issues went without their medication until they could access their prescribed DMT. Relapses were reported during periods of reduced DMT access for almost half (56/118, 47.5%) of those with past issues and nearly half (22/45, 49%) of those with current issues. Resolving access issues involved multiple stakeholder agents often coordinated in a patient-led effort. Among those who had resolved issues, about half (57/119, 47.9%) reported that doctors or office staff were involved, under half (48/119, 40.3%) were involved themselves, and about a third (39/119, 32.8%) reported the drug manufacturer was involved in resolving the issue. Follow-up interviews revealed that the financial burden associated with obtaining a prescribed DMT led to nonadherence. Additionally, participants felt that DMT treatment delays and stress associated with obtaining the DMT triggered relapses or worsened their MS. CONCLUSIONS This study expands current research by using a patient-centered, mixed-methods approach to describe barriers to MS treatment, the process to resolve barriers, and the perceived impact of treatment barriers on outcomes. Issues related to DMT access occur frequently, with individuals often serving as their own agents when navigating access difficulties to obtain their medication(s). Support for resolution of DMT access is needed to prevent undue stress and nonadherence.

Objective. In the media, numerous public figures have reported involuntary emotional outbursts arising from watching films on planes, resembling neurological phenomena such as pseudobulbar affect. Putative risk factors put forward include altitude, mild hypoxia, or alcohol. Our objective was to determine whether watching a film on an airplane is really more likely to induce involuntary, uncontrollable, or surprising crying than watching one on the ground, described in some social media as "altitude-adjusted lachrymosity syndrome" (AALS), or whether this is a pseudo-phenomena. Methods. Amazon Mechanical Turk survey participants (N=1,084) living in the United States who had watched a film on a plane in the past 12 months were invited to complete an online survey. The main outcome measures were likelihood of crying in a logistic regression model including location of viewing, age, gender, genre of film, subjective film rating, annual household income, watching a "guilty pleasure" film, drinking alcohol, feeling tired or jetlagged, or having a recent emotional life event. Results. About 1 in 4 films induced crying. Watching a film on a plane per se does not appear to induce involuntary crying. Significant predictors of crying included dramas or family films, a recent life event, watching a "guilty pleasure", high film ratings, and female gender. Medical conditions, age, income, alcohol use, and feeling tired or jetlagged were not significant. Conclusion. People reporting the pseudophenomena of AALS are most likely experiencing "dramatically heightened exposure", watching as many films on a plane in a week's return trip as they would in a year at the cinema. Such perceptions are probably magnified by confirmation bias and further mentions in social media.

The journey of illness as lived by patients and caregivers is not routinely captured for systematic sharing or continuous learning. Consequently, far too many people face the uncertainty of what to expect when confronted with the challenges of illness and caregiving. Patients and caregivers muddle through unfamiliar territory without the benefit of the accumulated knowledge of others who have been on the journey before them. Why do patients and caregivers continually need to search out or reinvent solutions to manage their daily lives with life‐changing illness when others have surely faced similar challenges? Are not the lived experiences and contextual perspectives of patients and caregivers valuable for a learning health system? At PatientsLikeMe, an online patient research network, we believe it is not possible to realize the full potential of a continuously learning health system without the expertise and knowledge of patients and caregivers.This paper describes the development of the Patient and Caregiver Journey Framework and related patient‐informed principles for design and measurement created by PatientsLikeMe in partnership with patients and caregivers using qualitative research methods, immersive observation and directed one‐on‐one conversations. These tools provide a person‐centric foundation upon which the knowledge and experience of patients and caregivers are collected, curated, aggregated and shared to support a data‐driven learning health community continuously powered by the people and for the people.

We constructed ALS progression trajectories using ALSFRS-R scores from the PLM platform and the PRO-ACT database. We normalized the time dimension of each patient’s trajectory by factoring out the initial decline slope for the first onsetting spinal group and then re-expressed each trajectory in terms of normalized slopes and onset times for each spinal group. We modeled the relationship between initial onset site and slope and the slopes and onset times of the remaining spinal groups, thus identifying patterns of onset among the spinal groups for patients experiencing different sites of initial onset.

The development of new therapies has a rich history, evolves quickly with societal trends, and will have an exciting future. The last century has seen an exponential increase in complex interactions between medical practitioners, pharmaceutical companies, governments and patients. We believe technology and societal expectations will open up the opportunity for more individuals to participate as information becomes more freely available and inequality less acceptable. Corporations must recognize that usual market forces do not function ideally in a setting where health is regarded as a human right, and as modern consumers, patients will increasingly take control of their own data, wellbeing, and even the means of production for developing their own treatments. Ethics and legislation will increasingly impact the processes that facilitate drug development, distribution and administration. This article collection is a cross-journal collaboration, between the Journal of Pharmaceutical Policy and Practice (JoPPP) and BMC Medicine that seeks to cover recent advances in drug development, medicines use, policy and access with high clinical and public health relevance in the future.The Medicine and the Future of Health article collection is a joint collection between BMC Medicine and Journal of Pharmaceutical Policy and Practice. Therefore, this Editorial by the guest editors has been published in both journals.

The development of new therapies has a rich history, evolves quickly with societal trends, and will have an exciting future. The last century has seen an exponential increase in complex interactions between medical practitioners, pharmaceutical companies, governments and patients. We believe technology and societal expectations will open up the opportunity for more individuals to participate as information becomes more freely available and inequality less acceptable. Corporations must recognize that usual market forces do not function ideally in a setting where health is regarded as a human right, and as modern consumers, patients will increasingly take control of their own data, wellbeing, and even the means of production for developing their own treatments. Ethics and legislation will increasingly impact the processes that facilitate drug development, distribution and administration. This article collection is a cross-journal collaboration, between the Journal of Pharmaceutical Policy and Practice (JoPPP) and BMC Medicine that seeks to cover recent advances in drug development, medicines use, policy and access with high clinical and public health relevance in the future.The Medicine and the Future of Health article collection is a joint collection between BMC Medicine and Journal of Pharmaceutical Policy and Practice. Therefore, this Editorial by the guest editors has been published in both journals.