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 19

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Sharing Health Data for Better Outcomes on PatientsLikeMe

Paul Wicks, Michael Massagli, Jeana Frost … (2010)

Background 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.

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Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data

Jeana H Frost, Michael Massagli (2008)

Background This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their health care providers. While this type of record does seem to have beneficial effects for the patient–physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders—the patients—is not well documented or understood. Objective PatientsLikeMe is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition. We begin this paper by describing the components and design of the online community. We then identify and analyze how users of this platform reference personal health information within patient-to-patient dialogues. Methods Patients diagnosed with amyotrophic lateral sclerosis (ALS) post data on their current treatments, symptoms, and outcomes. These data are displayed graphically within personal health profiles and are reflected in composite community-level symptom and treatment reports. Users review and discuss these data within the Forum, private messaging, and comments posted on each other’s profiles. We analyzed member communications that referenced individual-level personal health data to determine how patient peers use personal health information within patient-to-patient exchanges. Results Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns. Conclusions Few studies examine the use of personal health information by patients themselves. This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management. We recommend that future designs make each patient’s health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.

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Evaluation of an internet support group for women with primary breast cancer.

Timothy E. Adams, John Taylor, Georg Alpers … (2003)

Women with breast carcinoma commonly experience psychologic distress following their diagnosis. Women who participate in breast cancer support groups have reported significant reduction in their psychologic distress and pain and improvement in the quality of their lives. Web-based breast cancer social support groups are widely used, but little is known of their effectiveness. Preliminary evidence suggests that women benefit from their participation in web-based support groups. Seventy-two women with primary breast carcinoma were assigned randomly to a 12-week, web-based, social support group (Bosom Buddies). The group was semistructured, moderated by a health care professional, and delivered in an asynchronous newsgroup format. The results indicate that a web-based support group can be useful in reducing depression and cancer-related trauma, as well as perceived stress, among women with primary breast carcinoma. The effect sizes ranged from 0.38 to 0.54. Participants perceived a variety of benefits and high satisfaction from their participation in the intervention This study demonstrated that the web-based program, Bosom Buddies, was effective in reducing participants' scores on depression, perceived stress, and cancer-related trauma measures. The effect size of the intervention was in the moderate range. Although web-based social support groups offer many advantages, this delivery mechanism presents a number of ethical issues that need to be addressed. Copyright 2003 American Cancer Society.

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Author and article information

Contributors

Paul Wicks:

PatientsLikeMe160 Second StreetCambridge, MA, 02142United States1 6174755108pwicks@patientslikeme.com

ORCID: http://orcid.org/0000-0002-2293-9284

Journal

Journal ID (nlm-ta): J Med Internet Res

Journal ID (iso-abbrev): J. Med. Internet Res

Journal ID (publisher-id): JMIR

Title: Journal of Medical Internet Research

Publisher: JMIR Publications (Toronto, Canada )

ISSN (Print): 1439-4456

ISSN (Electronic): 1438-8871

Publication date Collection: May 2018

Publication date (Electronic): 07 May 2018

Volume: 20

Issue: 5

Electronic Location Identifier: e175

Affiliations

[1] ¹ PatientsLikeMe Cambridge, MA United States

[2] ² AstraZeneca UK Ltd Luton United Kingdom

Author notes

Corresponding Author: Paul Wicks pwicks@ 123456patientslikeme.com

Author information

Paul Wicks http://orcid.org/0000-0002-2293-9284

Eileen Mack Thorley http://orcid.org/0000-0002-8704-3438

Kristina Simacek http://orcid.org/0000-0002-0478-4397

Christopher Curran http://orcid.org/0000-0002-3283-550X

Cathy Emmas http://orcid.org/0000-0002-6412-5502

Article

Publisher ID: v20i5e175

DOI: 10.2196/jmir.9909

PMC ID: 5962830

PubMed ID: 29735472

SO-VID: 5ec4ec9c-41d0-40dd-98c7-2c568a93a752

License:

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.

History

Date received : 22 January 2018

Date revision requested : 15 February 2018

Date revision received : 22 March 2018

Date accepted : 6 April 2018

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