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Service Delivery Innovation Profile

Online Communities Foster Data-Sharing, Communication, and Learning Among Patients With Neurologic and Other Chronic Diseases


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Snapshot

Summary

PatientsLikeMe is an online community for patients who have one or more of over 1,000 life-changing illnesses, including amyotrophic lateral sclerosis, multiple sclerosis, Parkinson’s disease, mood disorders, fibromyalgia, progressive supranuclear palsy, multiple system atrophy, Devic disease, and human immunodeficiency virus/acquired immunodeficiency syndrome. The service enables patients to record their functional outcomes on a regular basis, share these data securely with clinicians and caregivers, and communicate with similar patients for support and learning. The program has proven quite popular, with 10 percent of newly diagnosed amyotrophic lateral sclerosis patients in the United States registering on the site each month and 2 percent of all multiple sclerosis patients in the country participating. Although a formal evaluation of the program's impact on patient outcomes has not been conducted, the majority of users find it to be helpful in facilitating communication and making treatment decisions.

Evidence Rating (What is this?)

Suggestive: The evidence consists of post-implementation statistics on program usage and results from an internal survey of users. An ongoing survey is further evaluating the impact of the site. In addition, a collaboration with a consortium of hospitals is underway to validate use of patient-reported outcome measures longitudinally.
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Developing Organizations

PatientsLikeMe Inc.
Cambridge, MAend do

Use By Other Organizations

PatientsLikeMe is collaborating with several institutions, including Massachusetts General Hospital, The Forbes/Norris Pacific ALS Centre, King’s College in London, and Penn State University, to incorporate the system's features into clinical practice.

In early 2008, PatientsLikeMe contacted every ALS clinic in North America, the United Kingdom, and Australia to invite them to participate and encourage their patients to take advantage of the system's resources. Interested patients with chronic diseases and conditions not yet covered by PatientsLikeMe.com are encouraged to suggest formation of a new community via the front page of the site; these suggestions are periodically collated and analyzed against the organization's current roadmap to assess feasibility. A patient suggestion led to the formation of a community for patients with fibromyalgia, a regional pain syndrome of unknown origin; this online community now has more than 2,000 patients.

Date First Implemented

2006
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Patient Population

Vulnerable Populations > Disabled (physically)end pp

Problem Addressed

Patients with serious neurological or chronic conditions often find it hard to participate in their own care due to the complexity of the treatments and difficulties in assessing their progress relative to that of similar patients or to therapeutic targets.
  • Complex treatment decisions: Many patients diagnosed with a chronic neurological condition face difficult, complex treatment decisions that require support. In some cases there may be little that can be done via conventional medicine (thus creating a desire to learn about and evaluate experimental treatment regimens), while in other cases there may be a range of effective options, each with different side effects and potential risks. It can be difficult for patients to effectively participate in these decisions without significant support.
  • Difficulties in measuring outcomes: Clinicians seldom have the time or the tools to closely monitor a patient’s progress or responses to changes in therapy. Benchmarks that can illuminate how well an individual is doing relative to other patients or standard norms can be difficult to obtain, yet some patients and clinicians want and can benefit from this information.
  • Disempowered patients: Patients with neurological and other chronic conditions often feel helpless and disenfranchised by the medical system, particularly when (as is often the case) care is provided by multiple clinicians who may not coordinate or communicate with each other. Empowering patients so that they can take responsibility for their own care may improve their experience.
  • Lack of peer support: Although support groups can be beneficial, up to half of all individuals with a chronic condition do not attend such groups due to difficulties with transportation, logistics, or, for rare diseases, finding others locally with a similar condition.

What They Did

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Description of the Innovative Activity

PatientsLikeMe fosters online communities that allow patients to measure and self-assess functional outcomes using interactive versions of clinically validated scales, track their treatments and symptoms, and interact with their providers, caregivers, and other similarly situated patients. Key elements of the program are described below:
  • Patient services: As of March 2009, the program serves patients with amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), Parkinson’s disease, mood disorders (depression, bipolar, anxiety, obsessive compulsive disorder, and posttraumatic stress disorder), fibromyalgia, progressive supranuclear palsy, multiple system atrophy, Devic disease, and human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS). The system allows them to post information about themselves, assess their functional status and symptoms, record treatments, and find support. Specific functionality includes the ability to do the following:
    • Self-report functional status and compare with historical averages: For example, ALS patients can complete the self-report version of the ALS Functional Rating Scale, and see their scores plotted on a chart with percentile curves illustrating progress relative to historical averages from clinical trials.
    • Report symptom severity: For example, patients can report the severity of 10 of the core symptoms of ALS on a mild/moderate/severe scale and add any additional symptoms bothering them.
    • Record treatments: Patients can report any prescription drugs, over-the-counter drugs, supplements, therapies, and equipment they may be using.
    • Create a profile: Patients can create a profile with a chosen screen name, demographic information, and a short biography. Many users also choose to upload a photograph. Users can make their profile page public (allowing nonmembers to read it, including health care professionals on their medical team, friends, and family members) or can choose to remain anonymous or keep some information (e.g., treatments) private. A condensed version of the profile can be printed and brought to office visits to facilitate communication with physicians.
    • Search for and communicate with similar patients: Using a mapping technology from Google, users can find other patients like them by screening members using demographic and medical characteristics and refining the search by country, state, or city to find someone nearby. For example, a 45-year old male in Boston who has had ALS for 2 years could find similarly situated individuals to meet with or otherwise talk to about life challenges and interests as well the disease. The system includes a "walled-garden" forum for posting notes that can only be read by other members of the community (and are not available to any public search engine). Through this system, members can send private messages to other members and form a group of users around a particular topic. A tagging system also allows users to search for and recall topics of interest to them, and to "filter" out off-topic conversations. (As the site has become more popular, some participants have begun using it to discuss unrelated issues, such as politics.)
    • Research potential treatments, including drug database: Users can conduct research on treatments for symptoms and directly contact other patients already using them to learn about their experiences. Patients can also learn about and attempt to enroll in experimental scientific studies. To increase the quality of treatment information available, PatientsLikeMe recently integrated data from a commercially available drug database to ensure dosages and descriptions are accurate and up to date.
    • Report adverse events: Patients can report adverse drug events directly to the U.S. Food and Drug Administration through an enhanced reporting form that speeds up the process by precompleting known background information.
    • Receive reminders: Customizable systems allow patients to receive an e-mail reminder at a frequency set by the user, encouraging them to keep their profile up to date.
    • Input genetic information: Patients with ALS and other conditions with a known genetic component can enter details of their mutation status (obtained from their health care professional) into their profile. In the future, this feature will allow for phenotypically characterizing each mutation and potentially analyzing the response to treatments.
  • Services for health care professionals: With the patient's permission, physicians and other health care professionals can register as guests on the site and view the records of their patients. They may monitor progress and incorporate patient-reported outcomes into the therapeutic process both between and during clinic visits.
  • Services for researchers: Researchers may collaborate with the PatientsLikeMe research team on academic research. The team may be able to facilitate recruiting of patients with rare diseases for participation in clinical studies. To date, a number of patients with ALS and MS have been referred to commercial and academic clinical trials, thus significantly reducing the time needed for researchers to complete the recruitment process.
  • Caregiver services: Family members, friends, and other caregivers can, with the patient's permission, register and be linked to their loved one’s profile and participate as full members of the site.
  • Services for nonprofit organizations: Nonprofit organizations offering services that may be of interest to the community can have a dedicated page for their organization that provides information and other resources for patients.

Context of the Innovation

Stephen Heywood was 29 years old when he was diagnosed with the fatal and incurable muscle-wasting disease ALS. His family searched for an effective cure and worked hard to ensure that his symptoms were well managed. The family also became leading advocates to increase public awareness of ALS. His younger brother Ben Heywood and family friend Jeff Cole formed PatientsLikeMe to help solve some of the problems faced in caring for Stephen. They wanted to develop a forum where patients could learn about what others had tried, and what had and had not worked. They realized that although these conversations took place in hospitals, support groups, and, to some extent, on the Internet, the data were not being collected or interpreted systematically, and no effective mechanism existed to bring people in similar situations together, or to facilitate access to needed information and support. As a result, they developed a system that incorporates the sharing of self-reported data with peers and providers in a way that empowers patients and improves their chances of finding effective therapies. The program began with ALS, but has now expanded to include the other diseases mentioned previously.

Did It Work?

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Results

Although a formal evaluation of the program's impact on patient outcomes has not been conducted, PatientsLikeMe has attracted a significant number of patients, with the majority of users finding it to be helpful in facilitating communication and making treatment decisions.
  • Significant number of users: As of 2012, the program has more than 160,000 registered patients, covering more than 1,000 diseases. Some disease examples are MS, mood disorders, ALS, Parkinson’s disease, HIV/AIDS, and fibromyalgia. The average user spends 10 minutes on the site during each visit.
  • High levels of satisfaction: A recent survey of 93 participants found that 63 percent feel that PatientsLikeMe has made it easier to communicate with their health care team, 60 percent believe that it has made making decisions about treatments easier, and 55 percent report that their health care team has been supportive of their use of the site. The program has also received positive reviews and feedback from other patients, clinicians, and nonprofit organizations. Because of this enthusiasm, users have requested the development of a real-world conference that brings together different communities of users.

Evidence Rating (What is this?)

Suggestive: The evidence consists of post-implementation statistics on program usage and results from an internal survey of users. An ongoing survey is further evaluating the impact of the site. In addition, a collaboration with a consortium of hospitals is underway to validate use of patient-reported outcome measures longitudinally.

How They Did It

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Planning and Development Process

Key elements in the planning and development process are described below:
  • Identifying relevant outcomes: Program developers consulted with experts in ALS and other relevant clinical fields to identify the most widely used outcome measures as well as the most important symptoms and treatments to track.
  • Designing the site: Program developers worked with a Web usability expert to design the look and feel of the site, along with its initial features and user interface. A team of experienced software engineers designed and developed the code architecture to satisfy the original feature requirements and adequate scale to support multiple disease conditions. Although work on the site continues, the initial design and prototype development took approximately 6 months.
  • Addressing privacy concerns: Developers discussed potential privacy concerns and developed a statement about privacy as part of the Frequently Asked Questions portion of the site. This statement reminds patients that it is up to them to balance the risks related to privacy, noting that the more personal information shared (e.g., photos, location, birthday), the greater the risk of someone identifying them. The statement also assures users that PatientsLikeMe uses a variety of technical measures to maintain security and data integrity and to limit access to sensitive information.

Resources Used and Skills Needed

  • Staffing: The initial site was developed over a 6-month period by a team of experienced Web application engineers, with skills including user interface design, Web page development, Web application development, database development, and system administration. A consultant specializing in Web usability assisted with some parts of the user interface, while a specialist in ALS with a doctorate degree oversaw the management of the Web-based communities and the system's research capabilities.
  • Costs: Web site development, equipment, and overhead costs totaled approximately $5 million. Data on ongoing operating costs are unavailable.
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Funding Sources

Several investors contributed $5 million in initial funding, including CommerceNet, Omidyar Network, Collaborative Growth & Seed LLC, and Invus, LP. Ongoing operating costs are partially covered by partnerships with health care organizations that use anonymous data from, and permission-based access to, the PatientsLikeMe community for research purposes.end fs

Tools and Other Resources

PatientsLikeMe [Web site]. Available at: http://www.patientslikeme.com

Adoption Considerations

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Getting Started with This Innovation

  • Set up processes to encourage physicians, caregivers to register: For example, those who sign up for PatientsLikeMe receive support in sending e-mail invitations to their caregivers and health care professionals. In addition, all external facing pages have the option for users to share that page through social networking sites such as Facebook and Twitter.
  • Expect slow beginning: A relatively small subset of individuals will use the site intensively at first. Their use will ultimately drive participation by others.
  • Engage a neutral moderator: This moderator can "nurture" early users until the online community gains the critical mass needed to be self sufficient.
  • Expect initial clinician resistance: Some clinicians may not immediately embrace the system because they do not trust the Internet. Over time, they will likely become convinced of its merits once they see that it is reputable, saves them time, and is valued by patients.

Sustaining This Innovation

  • Encourage sharing of self-reported data: Users highly value this aspect of the program.
  • Provide rapid feedback to users who take part in research: This group should be made to feel appreciated for their contributions to learning and knowledge generation.
  • Promote security and privacy features: To build enrollment, emphasize the "walled-garden" forum, which shields all conversations from search engines, thus making people feel more comfortable discussing sensitive subjects such as depression or sexuality.

Use By Other Organizations

PatientsLikeMe is collaborating with several institutions, including Massachusetts General Hospital, The Forbes/Norris Pacific ALS Centre, King’s College in London, and Penn State University, to incorporate the system's features into clinical practice.

In early 2008, PatientsLikeMe contacted every ALS clinic in North America, the United Kingdom, and Australia to invite them to participate and encourage their patients to take advantage of the system's resources. Interested patients with chronic diseases and conditions not yet covered by PatientsLikeMe.com are encouraged to suggest formation of a new community via the front page of the site; these suggestions are periodically collated and analyzed against the organization's current roadmap to assess feasibility. A patient suggestion led to the formation of a community for patients with fibromyalgia, a regional pain syndrome of unknown origin; this online community now has more than 2,000 patients.

Additional Considerations

Communities of patients with extremely rare diseases (defined as fewer than 1,000 patients in the United States) will likely struggle to get a critical mass for an online community. As a result, efforts to create one should be conducted in partnership with nonprofit organizations and other sources of additional patients (e.g., outside the United States).

More Information

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Contact the Innovator

Lori Scanlon
PatientsLikeMe, Inc.
155 Second Street
Cambridge, MA 02141
Phone: (617) 499-4003
E-mail: lscanlon@patientslikeme.com

Innovator Disclosures

Ms. Scanlon has not indicated whether she has financial interests or business/professional affiliations relevant to the work described in this profile; however, information on funders is available in the Funding Sources section.
Comment on this Innovation

Disclaimer: The inclusion of an innovation in the Innovations Exchange does not constitute or imply an endorsement by the U.S. Department of Health and Human Services, the Agency for Healthcare Research and Quality, or Westat of the innovation or of the submitter or developer of the innovation. Read more.

Original publication: April 14, 2008.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: November 06, 2013.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.

Date verified by innovator: October 28, 2013.
Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.