Mixing
PatientsLikeMe
| Type of business | Private |
|---|---|
Type of site | Social networking service |
| Founded | 2004 |
| Headquarters | Cambridge, Massachusetts , United States |
| Key people | Ben Heywood James Heywood Monique Levy Joy Morel Sally Okun George Parker Jonathan White Paul Wicks |
| Website | patientslikeme.com |
| Launched | October 10, 2005 |
| Current status | Active |
Stephen Heywood's profile on PatientsLikeMe
PatientsLikeMe is a for profit patient network and real-time research platform. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences with the goal to improve outcomes. In the process, they generate data about the real-world nature of disease. With over 600,000 members, PatientsLikeMe is a source for real-world disease information and its patient-generated data form the basis of more than 100 peer-reviewed scientific studies. PatientsLikeMe was inspired by the life experiences of Stephen Heywood, diagnosed in 1998 at the age of 29 with amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease. The company was founded in 2004 by his brothers Jamie and Ben Heywood and long-time family friend Jeff Cole.
Contents
1 History
2 Expansion beyond ALS
3 iCarbonX investment
4 Products and services
4.1 Online data-sharing platform
4.2 Health economics and outcomes research
4.3 Open Research Exchange
5 Scientific work
6 Corporate affairs and culture
6.1 Business model
7 Awards and recognition
8 References
9 External links
History
After being diagnosed with ALS, Stephen's family founded a non-profit, ALS Therapy Development Institute, in an attempt to slow his disease and treat his symptoms. However, the slow pace of research and the trial-and-error approach was time-consuming and repetitive.[1] They realized that Stephen's experience was like that of other patients around the world who often have specific questions about their treatment options, and about what to expect. PatientsLikeMe helps patients connect with others who know firsthand what they are going through to share advice and resources. Through a health profile made up of structured and quantitative clinical reporting tools, members are able to monitor their health between doctor or hospital visits, document the severity of their symptoms, identify triggers, note how they are responding to new treatments, and track side effects. They have the opportunity to learn from the aggregated data of others with the same disease and see how they are doing in context with others. Members of the site use social tools such as forums, private messages, and profile comments to give and receive support from others, a support mechanism that has been shown to help improve their management and perceived control.[2]
Expansion beyond ALS
PatientsLikeMe launched its first online community for ALS patients in 2006. From there, the company began adding other communities for other life-changing conditions, including multiple sclerosis (MS), Parkinson's disease, fibromyalgia, HIV, chronic fatigue syndrome, mood disorders, epilepsy,[3]organ transplantation, progressive supranuclear palsy, multiple system atrophy, and Devic's disease (neuromyelitis optica). The company's approach was to read the scientific literature and listen to patients to identify outcome measures, symptoms, and treatments that were important to patients and could be accurately reported. For example, the development of the MS community involved the development of a new patient reported outcome measure, the MS Rating Scale (MSRS), to ensure patients could accurately determine how their condition was progressing over time.[4] However, building one community at a time was a slow process and the company risked being overly narrow in focus while excluding more than 5,000 patients who had requested new communities as of December 2010.[5]
In April 2011, the company expanded its scope and opened its doors to any patient with any condition.[6] Today the website covers more than 2,700 health conditions, with new members joining daily from the US and other countries around the world. Of note are the more than 10,000 ALS members, who have helped make PatientsLikeMe's flagship community the largest online population of ALS patients in the world.[7] In the United States, approximately 10 percent of newly diagnosed ALS patients register on the site each month, and 2 percent of all multiple sclerosis patients in the US participate in the community.[8]
iCarbonX investment
In 2017, PatientsLikeMe entered into a partnership with iCarbonX to apply next generation biological measures and machine learning to understand more about the basis of human health and disease. iCarbonX, founded in 2015 by renowned genomicist Jun Wang, took an equity position in PatientsLikeMe and is providing multi-omics characterization services to the company.
The partnership makes PatientsLikeMe part of iCarbonX's Digital Life Alliance, an ecosystem of leading health technology and application companies that are collaborating to digitize and analyze all aspects of life. The iCarbonX ecosystem has invested a total of nearly $400 million in the initial companies that form the alliance: PatientsLikeMe, SomaLogic, HealthTell, AOBiome, GALT, Imagu and Robustnique. The alliance's ultimate aim is to merge comprehensive biological and patient-generated data with artificial intelligence technology to help people better understand the medical, behavioral and environmental factors in their lives that may accelerate or mitigate disease, and optimize health.
Products and services
Online data-sharing platform
PatientsLikeMe allows members to input real-world data on their conditions, treatment history, side effects, hospitalizations, symptoms, disease-specific functional scores, weight, mood, quality of life and more on an ongoing basis. The result is a detailed longitudinal record – organized into charts and graphs – that allows patients to gain insight and identify patterns. The data-sharing platform is designed 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?”.[9] Answers come in the form of shared longitudinal data from other patients with the same condition(s), thus allowing members to place their experiences in context and see what treatments have helped other patients like them. Some communities, such as ALS, feature visual aids such as percentile curves on the patient profile, so that an individual user can see whether their rate of progression is fast, slow, or about average. A seizure tracker for patients with epilepsy helps identify triggers such as missed medication doses, sleep deprivation, or alcohol use,[10] and a "mood map" for patients with mood disorders helps to show different factors underlying their condition such as emotional control, anxiety, or external stress while all users can look for patterns in their daily health status such as day of the week or time of day.[11]
Three studies have been published suggesting that use of the platform improves patient outcomes. A survey conducted in 2010 amongst patients with ALS, MS, Parkinson's disease, HIV, fibromyalgia, and mood disorders found that 72% of users had found the site helpful in learning about a symptom they had experienced, 57% for understanding the side effects of a treatment, 42% in helping them to find another patient like them, amongst others.[2] A second study conducted in epilepsy found that in addition to the earlier benefits reported, patients with epilepsy reported a better understanding of their symptoms (59%), seizures (58%), and symptoms or treatments (55%).[12] The number of benefits they reported from using the site was strongly associated with the number of social connections they made with other members, dubbed the "dose effect curve of friendship".[10] Finally, a third study conducted with the US Department of Veteran Affairs and the University of California at San Francisco reported statistically significant improvements in validated measures of self-management and self-efficacy in veterans with epilepsy as a result of engaging with the site for a period of six weeks.[13]
Health economics and outcomes research
One of the ways in which the site makes revenue is by conducting scientific research studies for pharmaceutical companies, typically with an emphasis on issues that are important to both patients and industry.[14] For example, in 2011 a partnership with Novartis studied the barriers faced by people with multiple sclerosis in being adherent to taking their medication, which led to the development of an MS Treatment Adherence Questionnaire (MS-TAQ) which was made available to help patients and their doctors identify and address these issues through coping strategies and enhanced communication.[15] A 2013 collaboration with UCB explored factors underlying quality of life in epilepsy and identified a number of issues beyond the occurrence of seizures as being important, including symptoms such as problems concentrating, depression, memory problems, and treatment side effects.[16] In 2015 PatientsLikeMe worked with researchers at Genentech on a study inviting potential clinical trial participants to review study protocols in order to provide input and feedback to make the study more appealing.[17] A 2016 collaboration with Novartis published in Nature Biotechnology and Value in Health explored ways in which patients could provide systematic input into guiding drug development to help make it more patient-centered.[18][19] A study published with AstraZeneca in 2016 sought to understand the treatment expectations of women living with ovarian cancer and identified a shift from surviving with the condition to living with it.[20] Such research helps to improve understanding of disease, identify new approaches to management, and generate ideas to improve the products and services developed by pharmaceutical companies.
Open Research Exchange
Following the award in 2013 [21] and 2014 [22] of $4.5m in grants from the Robert Wood Johnson Foundation, the company developed an online tool called the Open Research Exchange (ORE) that allowed for the rapid creation, prototyping, testing, and validation of patient reported outcome measures, questionnaires that can establish the impact of symptoms and disease on patients. During the period of the grant, a number of academic collaborators were invited to develop measures on the platform including measures of treatment burden, hypertension management, feelings of satiety in diabetes and treatment burden in chronic illness.[23] The tool offers researchers the ability to rapidly get input from large numbers of patients in a matter of weeks or months [24] as opposed to much slower forms of research which can take years to complete.[12] A number of tools such as the Treatment Burden Questionnaire [24] and the Suicide Ideation and Behavior Assessment Tool (SIBAT)[25] have been published in the scientific literature for use by researchers and an editorial co-authored with industry leaders and a researcher at the FDA outlined ways in which PROs developed on the ORE could be used for the development of new medicines.[12] In addition to the traditional scientist-lead instruments, one instrument was developed by a person living with MS.[26] A 2016 RWJF grant for $900,000 charters PatientsLikeMe to work with the National Quality Forum to develop new measures for healthcare performance.[27]
Scientific work
A key differentiator of the site from more traditional online support groups, message boards, social media sites and list-serves is the emphasis on structured quantitative data which can be aggregated and used for research purposes.[28] This has permitted PatientsLikeMe's research team to author more than 100 peer-reviewed published scientific articles in collaboration with academic and commercial partners in leading journals such as the BMJ, Nature Biotechnology, and Neurology.[29] In addition, PatientsLikeMe has been mentioned by others in more than 3,000 published articles in the scientific literature[30] and has been featured as a business case study by the Harvard Business Review.[5] The company has also invited researchers to become embedded with the company such as an in-depth study explaining the organization of the platform and highlighting some of the challenges that social media and patient-centred research models are facing.[31][32]
Wherever possible, PatientsLikeMe has a policy of publishing its research output in open access form, so that patients, clinicians, and researchers can easily access their scientific output.[33] Instruments and questionnaires developed on PatientsLikeMe such as the MS Rating Scale or MS Treatment Adherence Questionnaire are licensed under Creative Commons so that they can be used freely by the community without complex or costly licensing requirements. The company also provides patients that take part in its studies with "givebacks" which concisely and rapidly give them feedback in lay language as to the results of research in which they have participated so they can understand how donating their data has been useful for research.[34]
The company's best known scientific endeavor relates to an online refutation of a clinical trial in ALS.[9] In 2008, a small Italian study was published suggesting that lithium carbonate could slow the progression of ALS.[35] In response, hundreds of members of PatientsLikeMe with the disease began taking the drug off-label.[36] Using the self-reported data of 348 ALS patients and taking just nine months to complete, PatientsLikeMe conducted a study which demonstrated that lithium did not slow the progress of the disease.[37] The team suggested that online collection of patient self-report data was no substitute for randomized placebo-controlled trials, but it might be a useful new form of clinical research in certain circumstances. A later study described how patients attempted to use the same tools to unblind clinical trials in which they were enrolled to try and see whether or not the experimental drugs they were taking were working.[38] A 2016 collaboration with Dr Rick Bedlack of the Duke ALS Clinic aims to overcome some of the burden of traditional ALS trials by allowing patients to take part in a clinical trial of a nutritional supplement, Lunasin, from their own home with just two clinic visits rather than regular monthly appointments.[39][40]
Corporate affairs and culture
Business model
Describing itself “a not just for profit,”[41] PatientsLikeMe does not allow advertising on its site but rather keeps the site free for users by selling research services as well as aggregated, de-identified data to its partners, including pharmaceutical companies and medical device makers. Typical commercial services include helping to optimize the designs of clinical trial protocols, developing new patient reported outcomes, or identifying the severity of symptoms in specific patient groups. The company enforces transparency about who uses the data and partners have included most of the largest pharmaceutical companies worldwide such as UCB, Novartis, Sanofi, Avanir Pharmaceuticals and Acorda Therapeutics.[42]
Awards and recognition
In 2007 the company was named as one of the "15 Companies that Will Change the World" by Business 2.0 and CNN Money[43] as well as added to the list of "Top Health IT Innovators" by FierceHealthIT .[44] In 2008 PatientsLikeMe received the Prix Ars Electronica Award of Distinction [45] and in March featured in a New York Times Magazine article entitled "Practicing Patients",[46] by Thomas Goetz, who later went on to feature the site in his book "The Decision Tree". Later in 2008 a television segment with Sanjay Gupta aired on the CBS Evening News.[47]Fast Company (magazine)'s 2010 list of Most Innovative Companies ranked PatientsLikeMe at #23.[48] A May 2010 New York Times article entitled "When Patients Meet Online”,[49] outlined the potential for advances for research. In 2012 Sanjay Gupta featured a research project conducted in collaboration with PatientsLikeMe on CNN's The Next List, profiling collaborator Dr Max Little.[50] In January 2013, the company featured as a clue on Jeopardy! - "A health data-sharing platform, patientslikeme.com, was founded by 3 engineers from this Boston-area university, initially"; the correct answer, provided by Helen Juvonen, was MIT.[51] In 2016, co-founders Jamie and Ben Heywood were awarded the 2016 Humanitarian Award by the International Alliance of ALS/MND Associations.[52] In 2017, PatientsLikeMe was named by Fast Company as one of the Top 10 Most Innovative Companies in Biotech.[53]
References
^ "Caring For Stephen - An Interview With Wendy Stacy - So Much So Fast". FRONTLINE - PBS. 3 April 2007..mw-parser-output cite.citation{font-style:inherit}.mw-parser-output .citation q{quotes:"""""""'""'"}.mw-parser-output .citation .cs1-lock-free a{background:url("//upload.wikimedia.org/wikipedia/commons/thumb/6/65/Lock-green.svg/9px-Lock-green.svg.png")no-repeat;background-position:right .1em center}.mw-parser-output .citation .cs1-lock-limited a,.mw-parser-output .citation .cs1-lock-registration a{background:url("//upload.wikimedia.org/wikipedia/commons/thumb/d/d6/Lock-gray-alt-2.svg/9px-Lock-gray-alt-2.svg.png")no-repeat;background-position:right .1em center}.mw-parser-output .citation .cs1-lock-subscription a{background:url("//upload.wikimedia.org/wikipedia/commons/thumb/a/aa/Lock-red-alt-2.svg/9px-Lock-red-alt-2.svg.png")no-repeat;background-position:right .1em center}.mw-parser-output .cs1-subscription,.mw-parser-output .cs1-registration{color:#555}.mw-parser-output .cs1-subscription span,.mw-parser-output .cs1-registration span{border-bottom:1px dotted;cursor:help}.mw-parser-output .cs1-ws-icon a{background:url("//upload.wikimedia.org/wikipedia/commons/thumb/4/4c/Wikisource-logo.svg/12px-Wikisource-logo.svg.png")no-repeat;background-position:right .1em center}.mw-parser-output code.cs1-code{color:inherit;background:inherit;border:inherit;padding:inherit}.mw-parser-output .cs1-hidden-error{display:none;font-size:100%}.mw-parser-output .cs1-visible-error{font-size:100%}.mw-parser-output .cs1-maint{display:none;color:#33aa33;margin-left:0.3em}.mw-parser-output .cs1-subscription,.mw-parser-output .cs1-registration,.mw-parser-output .cs1-format{font-size:95%}.mw-parser-output .cs1-kern-left,.mw-parser-output .cs1-kern-wl-left{padding-left:0.2em}.mw-parser-output .cs1-kern-right,.mw-parser-output .cs1-kern-wl-right{padding-right:0.2em}
^ ab Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T, Bradley R, Heywood J (June 2010). "Sharing health data for better outcomes on PatientsLikeMe". Journal of Medical Internet Research. 12 (2): e19. doi:10.2196/jmir.1549. PMC 2956230. PMID 20542858.
^ "UCB and PatientsLikeMe Partner to Give People With Epilepsy a Voice in Advancing Research Jun 15, 2009 07:00 ET". Marketwire.
^ Wicks P, Vaughan TE, Massagli MP (June 2012). "The multiple sclerosis rating scale, revised (MSRS-R): development, refinement, and psychometric validation using an online community". Health and Quality of Life Outcomes. 10: 70. doi:10.1186/1477-7525-10-70. PMC 3502161. PMID 22709981.
^ ab "PatientsLikeMe: An Online Community of Patients". hbr.org.
^ PatientsLikeMe Calls All Patients With Any Condition to Join
^ "ALS (Amyotrophic Lateral Sclerosis) symptoms, treatments & patient forums". PatientsLikeMe.
^ "Online Communities Foster Data-Sharing, Communication, and Learning Among Patients With Neurologic and Other Chronic Diseases". AHRQ Health Care Innovations Exchange.
^ ab Heywood J (October 2009). "The Big Idea My Brother Inspired". TED Talk.
^ ab Wicks P, Hixson J (7 February 2013). "The Patient Engagement Pill: Lessons From Epilepsy". Health Affairs.
^ Wicks P (1 December 2010). "Share and Compare: How are you feeling? Find out with InstantMe!". PatientsLikeMe.
^ abc Rothman M, Gnanaskathy A, Wicks P, Papadopoulos EJ (January 2015). "Can we use social media to support content validity of patient-reported outcome instruments in medical product development?". Value in Health. 18 (1): 1–4. doi:10.1016/j.jval.2014.10.001. PMID 25595228.
^ Hixson JD, Barnes D, Parko K, Durgin T, Van Bebber S, Graham A, Wicks P (July 2015). "Patients optimizing epilepsy management via an online community: the POEM Study". Neurology. 85 (2): 129–36. doi:10.1212/WNL.0000000000001728. PMC 4515038. PMID 26085605.
^ "How much are pharma companies willing to pay for patientslikeme data? - Quora". www.quora.com.
^ Wicks P, Massagli M, Kulkarni A, Dastani H (January 2011). "Use of an online community to develop patient-reported outcome instruments: the Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ)". Journal of Medical Internet Research. 13 (1): e12. doi:10.2196/jmir.1687. PMC 3221333. PMID 21266318.
^ "Epilepsy community: Factors affecting quality of life" (PDF). PatientsLikeMe.
^ "Clinical Researcher - April 2015". www.nxtbook.com. Retrieved 2017-06-07.
^ Wicks P, Lowe M, Gabriel S, Sikirica S, Sasane R, Arcona S (February 2015). "Increasing patient participation in drug development". Nature Biotechnology. 33 (2): 134–5. doi:10.1038/nbt.3145. PMID 25658275.
^ Lowe MM, Blaser DA, Cone L, Arcona S, Ko J, Sasane R, Wicks P (2016). "Increasing Patient Involvement in Drug Development". Value in Health. 19 (6): 869–878. doi:10.1016/j.jval.2016.04.009. PMID 27712716.
^ Simacek K, Raja P, Chiauzzi E, Eek D, Halling K (2017). "What Do Ovarian Cancer Patients Expect From Treatment?: Perspectives From an Online Patient Community". Cancer Nursing. 40 (5): E17–E27. doi:10.1097/NCC.0000000000000415. PMID 27454765.
^ "RWJF awards $1.9 million grant to PatientsLikeMe to create world's first open research platform to develop patient-centered health outcome measurements". PatientsLikeMe.
^ "PatientsLikeMe Invites Patients to Lead Research Projects On Open Research Exchange". 27 March 2014.
^ "PatientsLikeMe Selects First Pilot Users For Open Research Exchange™". 13 August 2013.
^ ab Tran VT, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P (July 2014). "Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform". BMC Medicine. 12: 109. doi:10.1186/1741-7015-12-109. PMC 4098922. PMID 24989988.
^ Alphs L, Canuso C, Williamson D, et al. (SIBAT Consortium). "Suicide Ideation and Behavior Assessment Tool (SIBAT): A Novel Measure of Suicidal Ideation and Behavior and Perceived Suicide Risk" (PDF). Janssen Research and Development.
^ Marcus AD (30 March 2015). "The Search for a Better Definition of Pain". Wall Street Journal – via www.wsj.com.
^ Weiss AF (1 March 2016). "Patients Must Be Part Of Defining Quality And Increasing Value". Health Affairs. Retrieved 2017-06-07.
^ Weber GM, Mandl KD, Kohane IS (June 2014). "Finding the missing link for big biomedical data". JAMA. 311 (24): 2479–80. doi:10.1001/jama.2014.4228. PMID 24854141.
^ "PatientsLikeMe's Publications". PatientsLikeMe's.
^ "patientslikeme - Google Scholar". scholar.google.com.
^ Tempini N (2015). "Governing PatientsLike Me: Information Production and Research Through an Open, Distributed, and Data-Based Social Media Network". The Information Society. 31 (2): 193–211. doi:10.1080/01972243.2015.998108.
^ Kallinikos J, Tempini N (2014). "Patient Data as Medical Facts: Social Media Practices as a Foundation for Medical Knowledge Creation". Information Systems Research. 25 (4): 817–833. doi:10.1287/isre.2014.0544.
^ "Open Access Is Not for Scientists. It's for Patients. - Speaking of Medicine". 14 June 2012.
^ "Update and results the patient voice analysis study". PatientsLikeMe.
^ Fornai F, Longone P, Cafaro L, Kastsiuchenka O, Ferrucci M, Manca ML, Lazzeri G, Spalloni A, Bellio N, Lenzi P, Modugno N, Siciliano G, Isidoro C, Murri L, Ruggieri S, Paparelli A (February 2008). "Lithium delays progression of amyotrophic lateral sclerosis". Proceedings of the National Academy of Sciences of the United States of America. 105 (6): 2052–7. doi:10.1073/pnas.0708022105. PMC 2538879. PMID 18250315.
^ Brownstein CA, Brownstein JS, Williams DS, Wicks P, Heywood JA (October 2009). "The power of social networking in medicine". Nature Biotechnology. 27 (10): 888–90. doi:10.1038/nbt1009-888. PMID 19816437.
^ Wicks P, Vaughan TE, Massagli MP, Heywood J (May 2011). "Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm". Nature Biotechnology. 29 (5): 411–4. doi:10.1038/nbt.1837. PMID 21516084.
^ Wicks P, Vaughan T, Heywood J (January 2014). "Subjects no more: what happens when trial participants realize they hold the power?". BMJ. 348: g368. doi:10.1136/bmj.g368. PMC 3905107. PMID 24472779.
^ Marcus AD (2016-06-13). "The Mystery of ALS Patients Who See Improvement". Wall Street Journal. ISSN 0099-9660. Retrieved 2017-06-07.
^ "Simplified Study Aims To Quickly Test A Long-Shot ALS Treatment". NPR.org. Retrieved 2017-06-07.
^ "What are the company's core values?". PatientsLikeMe help center.
^ "Partners". www.patientslikeme.com.
^ "Business 2.0 and CNN Money Recognize PatientsLikeMe as one of its "Next Disruptors: 15 Companies That Will Change The World"". www.patientslikeme.com.
^ "Archived copy". Archived from the original on 2014-02-12. Retrieved 2015-08-18.CS1 maint: Archived copy as title (link)
^ "2008 Prix Winners: Digital Communities – Prix Ars Electronica". www.aec.at.
^ Goetz T (March 23, 2008). "Practicing Patients". The New York Times.
^ "Social Networking For Medical Patients".
^ Westly E (17 February 2010). "Fast Company's 2010 Most Innovative Companies". Fast Company. Archived from the original on 2011-07-13.
^ Singer N (29 May 2010). "When Patients Meet Online, Are There Side Effects?". The New York Times – via NYTimes.com.
^ "PatientsLikeMe and Dr. Max Little Team Up to Advance Parkinson's Research Through the Patient Voice". PatientsLikeMe. 3 December 2012.
^ "jedoublen/jeopardy". GitHub.
^ "PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award | PatientsLikeMe". news.patientslikeme.com. Retrieved 2017-03-07.
^ "The Most Innovative Companies of 2017 by Sector: Biotech". Fast Company. Retrieved 2017-03-07.
External links
- Official website
- Blog - The Value of Openness
- New Scientist Article 'How the MySpace mindset can boost medical science' Issue dated May 15, 2008
- Newsweek Article 'Power to the bottom' Issue dated September 15, 2008
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