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{{Infobox dot-com company
 
{{Infobox dot-com company
 
| name = PatientsLikeMe
 
| name = PatientsLikeMe
| company_type = [[Private company|Private]]
+
| company_type = [[Wikipedia:Private company|Private]]
 
| foundation = 2004
 
| foundation = 2004
| location_city = [[Cambridge, Massachusetts]]
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| location_city = [[Wikipedia:Cambridge, Massachusetts|Cambridge, Massachusetts]]
 
| location_country = United States|
 
| location_country = United States|
 
| url = [http://www.patientslikeme.com patientslikeme.com]
 
| url = [http://www.patientslikeme.com patientslikeme.com]
| website_type = [[Social networking service]]
+
| website_type = [[Wikipedia:Social networking service|Social networking service]]
 
| launch_date = October 10, 2005
 
| launch_date = October 10, 2005
 
| current_status = Active
 
| current_status = Active
 
}}
 
}}
 
[[Image:StephenProfile2011.jpg|thumb|right|Stephen Heywood's profile on PatientsLikeMe]]
 
[[Image:StephenProfile2011.jpg|thumb|right|Stephen Heywood's profile on PatientsLikeMe]]
'''PatientsLikeMe''' is the world’s largest integrated community, health management, and real-world data platform. Through PatientsLikeMe, a growing community of more than 830,000 people with over 2,900 conditions share personal stories and information about their health, symptoms, and treatments, with a goal to improve the lives of all patients through knowledge derived from shared real-world experiences and outcomes.  Data generated by patients themselves are systemically collected and quantified while also providing an environment for peer support and learning. These data capture the complex temporality and competing influences of different lifestyle choices, socio-demographics, conditions, and treatments on a person’s health. Everything members share empowers the community with personal agency, establishing PLM as a clinically robust resource with demonstrated impact, including more than 100 studies in peer-reviewed medical and scientific journals.  
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'''PatientsLikeMe''' is the world’s largest integrated community, health management, and real-world data platform. Through PatientsLikeMe, a growing community of more than 830,000 people with over 2,900 conditions share personal stories and information about their health, symptoms, and treatments, with a goal to improve the lives of all patients through knowledge derived from shared real-world experiences and outcomes. Data generated by patients themselves are systemically collected and quantified while also providing an environment for peer support and learning. These data capture the complex temporality and competing influences of different lifestyle choices, socio-demographics, conditions, and treatments on a person’s health. Everything members share empowers the community with personal agency, establishing PLM as a clinically robust resource with demonstrated impact, including more than 100 studies in peer-reviewed medical and scientific journals.  
    
==History==
 
==History==
   −
PatientsLikeMe was inspired by the life experiences of [[Stephen Heywood]], diagnosed in 1998 at the age of 29 with [[ALS|amyotrophic lateral sclerosis (ALS)]], or Lou Gehrig's disease. The company was founded in 2004 by his brothers [[James Heywood (chief executive)|Jamie]] and Ben Heywood and long-time family friend Jeff Cole.
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PatientsLikeMe was inspired by the life experiences of [[Wikipedia:Stephen Heywood|Stephen Heywood]], diagnosed in 1998 at the age of 29 with [[Wikipedia:ALS|amyotrophic lateral sclerosis (ALS)]], or Lou Gehrig's disease. The company was founded in 2004 by his brothers [[Wikipedia:James Heywood (chief executive)|Jamie]] and Ben Heywood and long-time family friend Jeff Cole.
   −
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.<ref>{{cite web|url=https://www.pbs.org/wgbh/pages/frontline/somuchsofast/heywoods/wendy.html|title=Caring For Stephen - An Interview With Wendy Stacy - So Much So Fast | work = FRONTLINE - PBS | date =  3 April 2007 }}</ref> 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.
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After being diagnosed with ALS, Stephen's family founded a non-profit, [[Wikipedia:ALS Therapy Development Institute|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.<ref>{{cite web|url=https://www.pbs.org/wgbh/pages/frontline/somuchsofast/heywoods/wendy.html|title=Caring For Stephen - An Interview With Wendy Stacy - So Much So Fast | work = FRONTLINE - PBS | date =  3 April 2007 }}</ref> 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 was created to help 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.<ref name="PLM User Survey">{{cite journal | vauthors = Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T, Bradley R, Heywood J | display-authors = 6 | title = Sharing health data for better outcomes on PatientsLikeMe | journal = Journal of Medical Internet Research | volume = 12 | issue = 2 | pages = e19 | date = June 2010 | pmid = 20542858 | pmc = 2956230 | doi = 10.2196/jmir.1549 }}</ref>
 
PatientsLikeMe was created to help 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.<ref name="PLM User Survey">{{cite journal | vauthors = Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T, Bradley R, Heywood J | display-authors = 6 | title = Sharing health data for better outcomes on PatientsLikeMe | journal = Journal of Medical Internet Research | volume = 12 | issue = 2 | pages = e19 | date = June 2010 | pmid = 20542858 | pmc = 2956230 | doi = 10.2196/jmir.1549 }}</ref>
   −
In 2017, PatientsLikeMe entered into a partnership with [[Icarbonx|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 (scientist)|Jun Wang]], took an equity position in PatientsLikeMe and provided multi-omics characterization services to the company.
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In 2017, PatientsLikeMe entered into a partnership with [[Wikipedia:Icarbonx|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 [[Wikipedia:Jun Wang (scientist)|Jun Wang]], took an equity position in PatientsLikeMe and provided multi-omics characterization services to the company.
   −
In 2019, PatientsLikeMe was acquired by [[UnitedHealth Group]]. In 2020, PatientsLikeMe began to operate as an independent company backed by Optum Ventures, a UnitedHealth Group affiliate.  
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In 2019, PatientsLikeMe was acquired by [[Wikipedia:UnitedHealth Group|UnitedHealth Group]]. In 2020, PatientsLikeMe began to operate as an independent company backed by Optum Ventures, a UnitedHealth Group affiliate.  
    
==Expansion beyond ALS==
 
==Expansion beyond ALS==
   −
PatientsLikeMe launched its first online community for ALS patients in 2006.{{Citation needed|date=August 2019}} 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]],<ref>{{cite web|url=http://www.marketwire.com/press-release/Patientslikeme-1003655.html |work = Marketwire | title = UCB and PatientsLikeMe Partner to Give People With Epilepsy a Voice in Advancing Research Jun 15, 2009 07:00 ET }}</ref> [[organ transplantation]], [[progressive supranuclear palsy]], [[multiple system atrophy]], and [[Devic's disease]] (neuromyelitis optica).{{Citation needed|date=August 2019}} 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.<ref>{{cite journal | vauthors = Wicks P, Vaughan TE, Massagli MP | title = The multiple sclerosis rating scale, revised (MSRS-R): development, refinement, and psychometric validation using an online community | journal = Health and Quality of Life Outcomes | volume = 10 | pages = 70 | date = June 2012 | pmid = 22709981 | pmc = 3502161 | doi = 10.1186/1477-7525-10-70 }}</ref> 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.<ref name="hbr.org">{{cite web|url=https://hbr.org/product/PatientsLikeMe--An-Online/an/511093-PDF-ENG|title=PatientsLikeMe: An Online Community of Patients|website=hbr.org}}</ref>
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PatientsLikeMe launched its first online community for ALS patients in 2006.{{Citation needed|date=August 2019}} From there, the company began adding other communities for other life-changing conditions, including [[Wikipedia:multiple sclerosis|multiple sclerosis]] (MS), [[Wikipedia:Parkinson's disease|Parkinson's disease]], [[Wikipedia:fibromyalgia|fibromyalgia]], [[Wikipedia:HIV|HIV]], [[Wikipedia:chronic fatigue syndrome|chronic fatigue syndrome]], [[Wikipedia:mood disorders|mood disorders]], [[Wikipedia:epilepsy|epilepsy]],<ref>{{cite web|url=http://www.marketwire.com/press-release/Patientslikeme-1003655.html |work = Marketwire | title = UCB and PatientsLikeMe Partner to Give People With Epilepsy a Voice in Advancing Research Jun 15, 2009 07:00 ET }}</ref> [[Wikipedia:organ transplantation|organ transplantation]], [[Wikipedia:progressive supranuclear palsy|progressive supranuclear palsy]], [[Wikipedia:multiple system atrophy|multiple system atrophy]], and [[Wikipedia:Devic's disease|Devic's disease]] (neuromyelitis optica).{{Citation needed|date=August 2019}} 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.<ref>{{cite journal | vauthors = Wicks P, Vaughan TE, Massagli MP | title = The multiple sclerosis rating scale, revised (MSRS-R): development, refinement, and psychometric validation using an online community | journal = Health and Quality of Life Outcomes | volume = 10 | pages = 70 | date = June 2012 | pmid = 22709981 | pmc = 3502161 | doi = 10.1186/1477-7525-10-70 }}</ref> 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.<ref name="hbr.org">{{cite web|url=https://hbr.org/product/PatientsLikeMe--An-Online/an/511093-PDF-ENG|title=PatientsLikeMe: An Online Community of Patients|website=hbr.org}}</ref>
    
In April 2011, the company expanded its scope and opened its doors to [http://www.disabilityhealthsupport.com.au any patient with any condition.]<ref>[http://blog.patientslikeme.com/2011/04/11/patientslikeme-calls-all-patients-with-any-condition-to-join PatientsLikeMe Calls All Patients With Any Condition to Join]</ref> Today the website covers more than 2,900 health conditions, with new members joining daily from the US and other countries around the world.  Of note are the nearly 14,000 ALS members, who have helped make PatientsLikeMe's flagship community the largest online population of ALS patients in the world.<ref>{{cite web|url=https://www.patientslikeme.com/conditions/9-als-amyotrophic-lateral-sclerosis|title=ALS (Amyotrophic Lateral Sclerosis) symptoms, treatments & patient forums | work = PatientsLikeMe }}</ref> 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.<ref>{{cite web|url=https://innovations.ahrq.gov/profiles/online-communities-foster-data-sharing-communication-and-learning-among-patients-neurologic|title=Online Communities Foster Data-Sharing, Communication, and Learning Among Patients With Neurologic and Other Chronic Diseases | work = AHRQ Health Care Innovations Exchange }}</ref>
 
In April 2011, the company expanded its scope and opened its doors to [http://www.disabilityhealthsupport.com.au any patient with any condition.]<ref>[http://blog.patientslikeme.com/2011/04/11/patientslikeme-calls-all-patients-with-any-condition-to-join PatientsLikeMe Calls All Patients With Any Condition to Join]</ref> Today the website covers more than 2,900 health conditions, with new members joining daily from the US and other countries around the world.  Of note are the nearly 14,000 ALS members, who have helped make PatientsLikeMe's flagship community the largest online population of ALS patients in the world.<ref>{{cite web|url=https://www.patientslikeme.com/conditions/9-als-amyotrophic-lateral-sclerosis|title=ALS (Amyotrophic Lateral Sclerosis) symptoms, treatments & patient forums | work = PatientsLikeMe }}</ref> 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.<ref>{{cite web|url=https://innovations.ahrq.gov/profiles/online-communities-foster-data-sharing-communication-and-learning-among-patients-neurologic|title=Online Communities Foster Data-Sharing, Communication, and Learning Among Patients With Neurologic and Other Chronic Diseases | work = AHRQ Health Care Innovations Exchange }}</ref>
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===Online data-sharing platform===
 
===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?”.<ref name="Heywood_2009">{{cite web | first = Jamie | last = Heywood | name-list-style = vanc | title =  The Big Idea My Brother Inspired | date = October 2009 | url = http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired | work = TED Talk }}</ref> 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,<ref name="healthaffairs.org">{{cite web | first1 = Paul | last1 = Wicks  | first2 = John | last2 = Hixson | name-list-style = vanc | title = The Patient Engagement Pill: Lessons From Epilepsy| date = 7 February 2013 | url = http://healthaffairs.org/blog/2013/02/07/the-patient-engagement-pill-lessons-from-epilepsy/ | work = Health Affairs }}</ref> 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.<ref>{{cite web | date = 1 December 2010 | first = Paul | last = Wicks | name-list-style = vanc | title = Share and Compare: How are you feeling? Find out with InstantMe! | url = http://blog.patientslikeme.com/2010/12/01/how-are-you-feeling-find-out-with-instantme/ | work = PatientsLikeMe }}</ref> On top of patients being able to organize their treatment, better understand and control their disease, they can access a beneficial [[Psychosocial|psycho-social]] support network. Patients can share with their peers who have had or are going through similar experiences. Diagnosis of a long-term illness can be socially isolating as the patient is usually the only one in their family or friend group going through it. There is an experience gap between people who are diagnosed with cancer (or other long-term illness) and the ones who are not. Being social animals, this isolation often leads to anxiety and depression <ref>{{cite journal | vauthors = Yang YC, McClintock MK, Kozloski M, Li T | title = Social isolation and adult mortality: the role of chronic inflammation and sex differences | journal = Journal of Health and Social Behavior | volume = 54 | issue = 2 | pages = 183–203 | date = June 2013 | pmid = 23653312 | pmc = 3998519 | doi = 10.1177/0022146513485244 }}</ref>(related to diagnosis) which are known to undermine treatment and patient outcomes.<ref name=":1">{{cite journal | vauthors = Sherrill C, Smith M, Mascoe C, Bigus E, Abbitt D | title = Effect of Treating Depressive Disorders on Mortality of Cancer Patients | journal = Cureus | volume = 9 | issue = 10 | pages = e1740 | date = October 2017 | pmid = 29209587 | pmc = 5711502 | doi = 10.7759/cureus.1740 }}</ref> On relation to various cancers, peer support groups of "others who have had the same or similar experiences" have been linked to reduced symptoms of depression,<ref>{{cite journal | vauthors = Pfeiffer PN, Heisler M, Piette JD, Rogers MA, Valenstein M | title = Efficacy of peer support interventions for depression: a meta-analysis | journal = General Hospital Psychiatry | volume = 33 | issue = 1 | pages = 29–36 | date = January 2011 | pmid = 21353125 | pmc = 3052992 | doi = 10.1016/j.genhosppsych.2010.10.002 }}</ref> increase patient compliance to treatment regimens <ref>{{cite journal | vauthors = Tehrani AM, Farajzadegan Z, Rajabi FM, Zamani AR | title = Belonging to a peer support group enhance the quality of life and adherence rate in patients affected by breast cancer: A non-randomized controlled clinical trial | journal = Journal of Research in Medical Sciences | volume = 16 | issue = 5 | pages = 658–65 | date = May 2011 | pmid = 22091289 | pmc = 3214378 }}</ref> and increased survival outcomes.<ref name=":1" />
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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?”.<ref name="Heywood_2009">{{cite web | first = Jamie | last = Heywood | name-list-style = vanc | title =  The Big Idea My Brother Inspired | date = October 2009 | url = http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired | work = TED Talk }}</ref> 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,<ref name="healthaffairs.org">{{cite web | first1 = Paul | last1 = Wicks  | first2 = John | last2 = Hixson | name-list-style = vanc | title = The Patient Engagement Pill: Lessons From Epilepsy| date = 7 February 2013 | url = http://healthaffairs.org/blog/2013/02/07/the-patient-engagement-pill-lessons-from-epilepsy/ | work = Health Affairs }}</ref> 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.<ref>{{cite web | date = 1 December 2010 | first = Paul | last = Wicks | name-list-style = vanc | title = Share and Compare: How are you feeling? Find out with InstantMe! | url = http://blog.patientslikeme.com/2010/12/01/how-are-you-feeling-find-out-with-instantme/ | work = PatientsLikeMe }}</ref> On top of patients being able to organize their treatment, better understand and control their disease, they can access a beneficial [[Wikipedia:Psychosocial|psycho-social]] support network. Patients can share with their peers who have had or are going through similar experiences. Diagnosis of a long-term illness can be socially isolating as the patient is usually the only one in their family or friend group going through it. There is an experience gap between people who are diagnosed with cancer (or other long-term illness) and the ones who are not. Being social animals, this isolation often leads to anxiety and depression <ref>{{cite journal | vauthors = Yang YC, McClintock MK, Kozloski M, Li T | title = Social isolation and adult mortality: the role of chronic inflammation and sex differences | journal = Journal of Health and Social Behavior | volume = 54 | issue = 2 | pages = 183–203 | date = June 2013 | pmid = 23653312 | pmc = 3998519 | doi = 10.1177/0022146513485244 }}</ref>(related to diagnosis) which are known to undermine treatment and patient outcomes.<ref name=":1">{{cite journal | vauthors = Sherrill C, Smith M, Mascoe C, Bigus E, Abbitt D | title = Effect of Treating Depressive Disorders on Mortality of Cancer Patients | journal = Cureus | volume = 9 | issue = 10 | pages = e1740 | date = October 2017 | pmid = 29209587 | pmc = 5711502 | doi = 10.7759/cureus.1740 }}</ref> On relation to various cancers, peer support groups of "others who have had the same or similar experiences" have been linked to reduced symptoms of depression,<ref>{{cite journal | vauthors = Pfeiffer PN, Heisler M, Piette JD, Rogers MA, Valenstein M | title = Efficacy of peer support interventions for depression: a meta-analysis | journal = General Hospital Psychiatry | volume = 33 | issue = 1 | pages = 29–36 | date = January 2011 | pmid = 21353125 | pmc = 3052992 | doi = 10.1016/j.genhosppsych.2010.10.002 }}</ref> increase patient compliance to treatment regimens <ref>{{cite journal | vauthors = Tehrani AM, Farajzadegan Z, Rajabi FM, Zamani AR | title = Belonging to a peer support group enhance the quality of life and adherence rate in patients affected by breast cancer: A non-randomized controlled clinical trial | journal = Journal of Research in Medical Sciences | volume = 16 | issue = 5 | pages = 658–65 | date = May 2011 | pmid = 22091289 | pmc = 3214378 }}</ref> and increased survival outcomes.<ref name=":1" />
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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.<ref name="PLM User Survey" /> 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%).<ref name="sciencedirect.com" /> 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".<ref name="healthaffairs.org" /> Finally, a third study conducted with the [[United States Department of Veterans Affairs|U.S. 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.<ref>{{cite journal | vauthors = Hixson JD, Barnes D, Parko K, Durgin T, Van Bebber S, Graham A, Wicks P | title = Patients optimizing epilepsy management via an online community: the POEM Study | journal = Neurology | volume = 85 | issue = 2 | pages = 129–36 | date = July 2015 | pmid = 26085605 | pmc = 4515038 | doi = 10.1212/WNL.0000000000001728 }}</ref>
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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.<ref name="PLM User Survey" /> 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%).<ref name="sciencedirect.com" /> 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".<ref name="healthaffairs.org" /> Finally, a third study conducted with the [[Wikipedia:United States Department of Veterans Affairs|U.S. 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.<ref>{{cite journal | vauthors = Hixson JD, Barnes D, Parko K, Durgin T, Van Bebber S, Graham A, Wicks P | title = Patients optimizing epilepsy management via an online community: the POEM Study | journal = Neurology | volume = 85 | issue = 2 | pages = 129–36 | date = July 2015 | pmid = 26085605 | pmc = 4515038 | doi = 10.1212/WNL.0000000000001728 }}</ref>
    
===Health economics and outcomes research===
 
===Health economics and outcomes research===
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===Open Research Exchange===
 
===Open Research Exchange===
Following the award in 2013 <ref>{{cite web|url=https://www.patientslikeme.com/press/20130225/77-rwjf-awards-19-million-grant-to-patientslikeme-to-create-worlds-first-open-research-platform-to-develop-patientcentered-health-outcome-measurements|title= RWJF awards $1.9 million grant to PatientsLikeMe to create world's first open research platform to develop patient-centered health outcome measurements | work = PatientsLikeMe }}</ref> and 2014 <ref>{{cite web|url=http://www.rwjf.org/en/library/articles-and-news/2014/03/patientslikeme-invite-patients-lead-open-research-exchange.html|title=PatientsLikeMe Invites Patients to Lead Research Projects On Open Research Exchange|date=27 March 2014 }}</ref> 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.<ref>{{cite web|url=http://www.rwjf.org/en/library/articles-and-news/2013/08/patientslikeme-selects-first-pilot-users.html|title=PatientsLikeMe Selects First Pilot Users For Open Research Exchange™|date=13 August 2013|publisher=}}</ref> The tool offers researchers the ability to rapidly get input from large numbers of patients in a matter of weeks or months <ref name="biomedcentral.com">{{cite journal | vauthors = Tran VT, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P | title = Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform | journal = BMC Medicine | volume = 12 | pages = 109 | date = July 2014 | pmid = 24989988 | pmc = 4098922 | doi = 10.1186/1741-7015-12-109 }}</ref> as opposed to much slower forms of research which can take years to complete.<ref name="sciencedirect.com">{{cite journal | vauthors = Rothman M, Gnanaskathy A, Wicks P, Papadopoulos EJ | title = Can we use social media to support content validity of patient-reported outcome instruments in medical product development? | journal = Value in Health | volume = 18 | issue = 1 | pages = 1–4 | date = January 2015 | pmid = 25595228 | doi = 10.1016/j.jval.2014.10.001 | doi-access = free }}</ref> A number of tools such as the Treatment Burden Questionnaire <ref name="biomedcentral.com" /> and the Suicide Ideation and Behavior Assessment Tool (SIBAT)<ref>{{cite web | vauthors = Alphs L, Canuso C, Williamson D | collaboration = SIBAT Consortium | publisher = Janssen Research and Development | title = Suicide Ideation and Behavior Assessment Tool (SIBAT): A Novel Measure of Suicidal Ideation and Behavior and Perceived Suicide Risk| url = https://patientslikeme_posters.s3.amazonaws.com/2015_Suicide%20Ideation%20and%20Behavior%20Assessment%20Tool%20SIBAT%20A%20Novel%20Measure%20of%20Suicidal%20Ideation%20and%20Behavior%20and%20Perceived%20Suicide%20Risk.pdf }}</ref> 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.<ref name="sciencedirect.com" /> In addition to the traditional scientist-lead instruments, one instrument was developed by a person living with MS.<ref>{{Cite news|url=https://www.wsj.com/articles/the-search-for-a-better-definition-of-pain-1427736432|title=The Search for a Better Definition of Pain|journal=Wall Street Journal|first=Amy Dockser|last=Marcus | name-list-style = vanc |date=30 March 2015|via=www.wsj.com}}</ref> A 2016 RWJF grant for $900,000 charters PatientsLikeMe to work with the [[National Quality Forum]] to develop new measures for healthcare performance.<ref>{{Cite news | first = Anne F. | last = Weiss | name-list-style = vanc | url = http://healthaffairs.org/blog/2016/03/01/patients-must-be-part-of-defining-quality-and-increasing-value/ |title=Patients Must Be Part Of Defining Quality And Increasing Value |work=Health Affairs | date = 1 March 2016 | access-date=2017-06-07 }}</ref>
+
Following the award in 2013 <ref>{{cite web|url=https://www.patientslikeme.com/press/20130225/77-rwjf-awards-19-million-grant-to-patientslikeme-to-create-worlds-first-open-research-platform-to-develop-patientcentered-health-outcome-measurements|title= RWJF awards $1.9 million grant to PatientsLikeMe to create world's first open research platform to develop patient-centered health outcome measurements | work = PatientsLikeMe }}</ref> and 2014 <ref>{{cite web|url=http://www.rwjf.org/en/library/articles-and-news/2014/03/patientslikeme-invite-patients-lead-open-research-exchange.html|title=PatientsLikeMe Invites Patients to Lead Research Projects On Open Research Exchange|date=27 March 2014 }}</ref> of $4.5m in grants from the [[Wikipedia:Robert Wood Johnson Foundation|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.<ref>{{cite web|url=http://www.rwjf.org/en/library/articles-and-news/2013/08/patientslikeme-selects-first-pilot-users.html|title=PatientsLikeMe Selects First Pilot Users For Open Research Exchange™|date=13 August 2013|publisher=}}</ref> The tool offers researchers the ability to rapidly get input from large numbers of patients in a matter of weeks or months <ref name="biomedcentral.com">{{cite journal | vauthors = Tran VT, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P | title = Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform | journal = BMC Medicine | volume = 12 | pages = 109 | date = July 2014 | pmid = 24989988 | pmc = 4098922 | doi = 10.1186/1741-7015-12-109 }}</ref> as opposed to much slower forms of research which can take years to complete.<ref name="sciencedirect.com">{{cite journal | vauthors = Rothman M, Gnanaskathy A, Wicks P, Papadopoulos EJ | title = Can we use social media to support content validity of patient-reported outcome instruments in medical product development? | journal = Value in Health | volume = 18 | issue = 1 | pages = 1–4 | date = January 2015 | pmid = 25595228 | doi = 10.1016/j.jval.2014.10.001 | doi-access = free }}</ref> A number of tools such as the Treatment Burden Questionnaire <ref name="biomedcentral.com" /> and the Suicide Ideation and Behavior Assessment Tool (SIBAT)<ref>{{cite web | vauthors = Alphs L, Canuso C, Williamson D | collaboration = SIBAT Consortium | publisher = Janssen Research and Development | title = Suicide Ideation and Behavior Assessment Tool (SIBAT): A Novel Measure of Suicidal Ideation and Behavior and Perceived Suicide Risk| url = https://patientslikeme_posters.s3.amazonaws.com/2015_Suicide%20Ideation%20and%20Behavior%20Assessment%20Tool%20SIBAT%20A%20Novel%20Measure%20of%20Suicidal%20Ideation%20and%20Behavior%20and%20Perceived%20Suicide%20Risk.pdf }}</ref> 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.<ref name="sciencedirect.com" /> In addition to the traditional scientist-lead instruments, one instrument was developed by a person living with MS.<ref>{{Cite news|url=https://www.wsj.com/articles/the-search-for-a-better-definition-of-pain-1427736432|title=The Search for a Better Definition of Pain|journal=Wall Street Journal|first=Amy Dockser|last=Marcus | name-list-style = vanc |date=30 March 2015|via=www.wsj.com}}</ref> A 2016 RWJF grant for $900,000 charters PatientsLikeMe to work with the [[Wikipedia:National Quality Forum|National Quality Forum]] to develop new measures for healthcare performance.<ref>{{Cite news | first = Anne F. | last = Weiss | name-list-style = vanc | url = http://healthaffairs.org/blog/2016/03/01/patients-must-be-part-of-defining-quality-and-increasing-value/ |title=Patients Must Be Part Of Defining Quality And Increasing Value |work=Health Affairs | date = 1 March 2016 | access-date=2017-06-07 }}</ref>
    
==Scientific work==
 
==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.<ref>{{cite journal | vauthors = Weber GM, Mandl KD, Kohane IS | title = Finding the missing link for big biomedical data | journal = JAMA | volume = 311 | issue = 24 | pages = 2479–80 | date = June 2014 | pmid = 24854141 | doi = 10.1001/jama.2014.4228 }}</ref> 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.<ref>{{cite web | url = http://www.patientslikeme.com/research/publications | title = PatientsLikeMe's Publications | work = PatientsLikeMe's}}</ref> In addition, PatientsLikeMe has been mentioned by others in more than 3,000 published articles in the scientific literature<ref>{{cite web|url=https://scholar.google.com/scholar?q=patientslikeme|title=patientslikeme - Google Scholar|website=scholar.google.com}}</ref> and has been featured as a business case study by the Harvard Business Review.<ref name="hbr.org" /> 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.<ref>{{cite journal |doi=10.1080/01972243.2015.998108 |title=Governing PatientsLike ''Me'': Information Production and Research Through an Open, Distributed, and Data-Based Social Media Network |journal=The Information Society |volume=31 |issue=2 |pages=193–211 |year=2015 |last1=Tempini |first1=Niccolò |s2cid=31003881 | name-list-style = vanc |url=http://eprints.lse.ac.uk/61327/1/__lse.ac.uk_storage_LIBRARY_Secondary_libfile_shared_repository_Content_Tempini%2C%20N_Governing%20patientslikeme_Tempini_Governing%20patientslikeme_2015.pdf }}</ref><ref>{{cite journal |doi=10.1287/isre.2014.0544 |title=Patient Data as Medical Facts: Social Media Practices as a Foundation for Medical Knowledge Creation |journal=Information Systems Research |volume=25 |issue=4 |pages=817–833 |year=2014 |last1=Kallinikos |first1=Jannis |last2=Tempini |first2=Niccolò | name-list-style = vanc |url=http://eprints.lse.ac.uk/60120/1/__lse.ac.uk_storage_LIBRARY_Secondary_libfile_shared_repository_Content_Kallinikos_Kalinikos_Patient_data_medical_2014_Kalinikos_Patient_data_medical_2014.pdf }}</ref>
 
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.<ref>{{cite journal | vauthors = Weber GM, Mandl KD, Kohane IS | title = Finding the missing link for big biomedical data | journal = JAMA | volume = 311 | issue = 24 | pages = 2479–80 | date = June 2014 | pmid = 24854141 | doi = 10.1001/jama.2014.4228 }}</ref> 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.<ref>{{cite web | url = http://www.patientslikeme.com/research/publications | title = PatientsLikeMe's Publications | work = PatientsLikeMe's}}</ref> In addition, PatientsLikeMe has been mentioned by others in more than 3,000 published articles in the scientific literature<ref>{{cite web|url=https://scholar.google.com/scholar?q=patientslikeme|title=patientslikeme - Google Scholar|website=scholar.google.com}}</ref> and has been featured as a business case study by the Harvard Business Review.<ref name="hbr.org" /> 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.<ref>{{cite journal |doi=10.1080/01972243.2015.998108 |title=Governing PatientsLike ''Me'': Information Production and Research Through an Open, Distributed, and Data-Based Social Media Network |journal=The Information Society |volume=31 |issue=2 |pages=193–211 |year=2015 |last1=Tempini |first1=Niccolò |s2cid=31003881 | name-list-style = vanc |url=http://eprints.lse.ac.uk/61327/1/__lse.ac.uk_storage_LIBRARY_Secondary_libfile_shared_repository_Content_Tempini%2C%20N_Governing%20patientslikeme_Tempini_Governing%20patientslikeme_2015.pdf }}</ref><ref>{{cite journal |doi=10.1287/isre.2014.0544 |title=Patient Data as Medical Facts: Social Media Practices as a Foundation for Medical Knowledge Creation |journal=Information Systems Research |volume=25 |issue=4 |pages=817–833 |year=2014 |last1=Kallinikos |first1=Jannis |last2=Tempini |first2=Niccolò | name-list-style = vanc |url=http://eprints.lse.ac.uk/60120/1/__lse.ac.uk_storage_LIBRARY_Secondary_libfile_shared_repository_Content_Kallinikos_Kalinikos_Patient_data_medical_2014_Kalinikos_Patient_data_medical_2014.pdf }}</ref>
   −
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.<ref>{{cite web|url=http://blogs.plos.org/speakingofmedicine/2012/06/14/open-access-is-not-for-scientists-its-for-patients/|title=Open Access Is Not for Scientists. It's for Patients. - Speaking of Medicine|date=14 June 2012|publisher=}}</ref> 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.<ref>{{cite web | title = Update and results the patient voice analysis study | url = http://blog.patientslikeme.com/2015/04/27/update-and-results-the-patient-voice-analysis-study/ | work = PatientsLikeMe | date = 2015-04-27 }}</ref>
+
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.<ref>{{cite web|url=http://blogs.plos.org/speakingofmedicine/2012/06/14/open-access-is-not-for-scientists-its-for-patients/|title=Open Access Is Not for Scientists. It's for Patients. - Speaking of Medicine|date=14 June 2012|publisher=}}</ref> Instruments and questionnaires developed on PatientsLikeMe such as the MS Rating Scale or MS Treatment Adherence Questionnaire are licensed under [[Wikipedia:Creative Commons|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.<ref>{{cite web | title = Update and results the patient voice analysis study | url = http://blog.patientslikeme.com/2015/04/27/update-and-results-the-patient-voice-analysis-study/ | work = PatientsLikeMe | date = 2015-04-27 }}</ref>
   −
The company's best known scientific endeavor relates to an online refutation of a clinical trial in ALS.<ref name="Heywood_2009" /> In 2008, a small Italian study was published suggesting that [[lithium (medication)|lithium carbonate]] could slow the progression of ALS.<ref>{{cite journal | vauthors = 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 | display-authors = 6 | title = Lithium delays progression of amyotrophic lateral sclerosis | journal = Proceedings of the National Academy of Sciences of the United States of America | volume = 105 | issue = 6 | pages = 2052–7 | date = February 2008 | pmid = 18250315 | pmc = 2538879 | doi = 10.1073/pnas.0708022105 | bibcode = 2008PNAS..105.2052F | doi-access = free }}</ref> In response, hundreds of members of PatientsLikeMe with the disease began taking the drug off-label.<ref name="PLM NatBio 2009">{{cite journal | vauthors = Brownstein CA, Brownstein JS, Williams DS, Wicks P, Heywood JA | title = The power of social networking in medicine | journal = Nature Biotechnology | volume = 27 | issue = 10 | pages = 888–90 | date = October 2009 | pmid = 19816437 | doi = 10.1038/nbt1009-888 | s2cid = 205271555 }}</ref> 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.<ref name="PLM Lithium">{{cite journal | vauthors = Wicks P, Vaughan TE, Massagli MP, Heywood J | title = Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm | journal = Nature Biotechnology | volume = 29 | issue = 5 | pages = 411–4 | date = May 2011 | pmid = 21516084 | doi = 10.1038/nbt.1837 | doi-access = free }}</ref> 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.<ref>{{cite journal | vauthors = Wicks P, Vaughan T, Heywood J | title = Subjects no more: what happens when trial participants realize they hold the power? | journal = BMJ | volume = 348 | pages = g368 | date = January 2014 | pmid = 24472779 | pmc = 3905107 | doi = 10.1136/bmj.g368 }}</ref> 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.<ref>{{Cite news|url=https://www.wsj.com/articles/the-mystery-of-als-patients-who-see-improvement-1465845332|title=The Mystery of ALS Patients Who See Improvement|last=Marcus|first=Amy Dockser| name-list-style = vanc |date=2016-06-13|work=Wall Street Journal|access-date=2017-06-07|language=en-US|issn=0099-9660}}</ref><ref>{{Cite news|url=https://www.npr.org/sections/health-shots/2016/10/25/499328778/simplified-study-aims-to-quickly-test-a-long-shot-als-treatment|title=Simplified Study Aims To Quickly Test A Long-Shot ALS Treatment|work=NPR.org|access-date=2017-06-07|language=en}}</ref> Participants completed “virtual visits” to record their ALSFRS-R and other health information in between initial and final on-site visits. Synthetic controls were matched to the intervention arm based on demographics and similarity scores of disease progression using algorithms developed at PLM that analyzed longitudinal ALSFRS-R data from the existing PLM population. This enabled clinicians to effectively power their study while further reducing on-site visits. This virtual model has resulted in fast and effective trial recruitment, retention, and adherence. Led by PLM, recruitment of trial participants for Duke was achieved in less than half the expected time.  
+
The company's best known scientific endeavor relates to an online refutation of a clinical trial in ALS.<ref name="Heywood_2009" /> In 2008, a small Italian study was published suggesting that [[Wikipedia:lithium (medication)|lithium carbonate]] could slow the progression of ALS.<ref>{{cite journal | vauthors = 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 | display-authors = 6 | title = Lithium delays progression of amyotrophic lateral sclerosis | journal = Proceedings of the National Academy of Sciences of the United States of America | volume = 105 | issue = 6 | pages = 2052–7 | date = February 2008 | pmid = 18250315 | pmc = 2538879 | doi = 10.1073/pnas.0708022105 | bibcode = 2008PNAS..105.2052F | doi-access = free }}</ref> In response, hundreds of members of PatientsLikeMe with the disease began taking the drug off-label.<ref name="PLM NatBio 2009">{{cite journal | vauthors = Brownstein CA, Brownstein JS, Williams DS, Wicks P, Heywood JA | title = The power of social networking in medicine | journal = Nature Biotechnology | volume = 27 | issue = 10 | pages = 888–90 | date = October 2009 | pmid = 19816437 | doi = 10.1038/nbt1009-888 | s2cid = 205271555 }}</ref> 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.<ref name="PLM Lithium">{{cite journal | vauthors = Wicks P, Vaughan TE, Massagli MP, Heywood J | title = Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm | journal = Nature Biotechnology | volume = 29 | issue = 5 | pages = 411–4 | date = May 2011 | pmid = 21516084 | doi = 10.1038/nbt.1837 | doi-access = free }}</ref> 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.<ref>{{cite journal | vauthors = Wicks P, Vaughan T, Heywood J | title = Subjects no more: what happens when trial participants realize they hold the power? | journal = BMJ | volume = 348 | pages = g368 | date = January 2014 | pmid = 24472779 | pmc = 3905107 | doi = 10.1136/bmj.g368 }}</ref> 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.<ref>{{Cite news|url=https://www.wsj.com/articles/the-mystery-of-als-patients-who-see-improvement-1465845332|title=The Mystery of ALS Patients Who See Improvement|last=Marcus|first=Amy Dockser| name-list-style = vanc |date=2016-06-13|work=Wall Street Journal|access-date=2017-06-07|language=en-US|issn=0099-9660}}</ref><ref>{{Cite news|url=https://www.npr.org/sections/health-shots/2016/10/25/499328778/simplified-study-aims-to-quickly-test-a-long-shot-als-treatment|title=Simplified Study Aims To Quickly Test A Long-Shot ALS Treatment|work=NPR.org|access-date=2017-06-07|language=en}}</ref> Participants completed “virtual visits” to record their ALSFRS-R and other health information in between initial and final on-site visits. Synthetic controls were matched to the intervention arm based on demographics and similarity scores of disease progression using algorithms developed at PLM that analyzed longitudinal ALSFRS-R data from the existing PLM population. This enabled clinicians to effectively power their study while further reducing on-site visits. This virtual model has resulted in fast and effective trial recruitment, retention, and adherence. Led by PLM, recruitment of trial participants for Duke was achieved in less than half the expected time.  
    
For the second ongoing study, PLM members are being recruited utilizing algorithms to identify individuals predicted to have similar progression. The intervention arm is invited to participate virtually for all aspects of the trial while combination of historic and newly generated untreated individuals will serve as the control arms. These cohorts with similar expected rates of progression reduce the total number of participants required to determine treatment efficacy.  
 
For the second ongoing study, PLM members are being recruited utilizing algorithms to identify individuals predicted to have similar progression. The intervention arm is invited to participate virtually for all aspects of the trial while combination of historic and newly generated untreated individuals will serve as the control arms. These cohorts with similar expected rates of progression reduce the total number of participants required to determine treatment efficacy.  
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===Business model===
 
===Business model===
Describing itself “a not just for profit,”<ref name="PatientsLikeMe Corporate FAQ">{{cite web|url=https://support.patientslikeme.com/hc/en-us/articles/201245710-What-are-the-company-s-core-values-|title=What are the company's core values?|website=PatientsLikeMe help center}}</ref> 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 (company)|UCB]], [[Novartis]], [[Sanofi]], Avanir Pharmaceuticals and [[Acorda Therapeutics]].<ref>{{cite web|url=http://www.patientslikeme.com/about/partners|title=Partners|website=www.patientslikeme.com}}</ref>
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Describing itself “a not just for profit,”<ref name="PatientsLikeMe Corporate FAQ">{{cite web|url=https://support.patientslikeme.com/hc/en-us/articles/201245710-What-are-the-company-s-core-values-|title=What are the company's core values?|website=PatientsLikeMe help center}}</ref> 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 [[Wikipedia:UCB (company)|UCB]], [[Wikipedia:Novartis|Novartis]], [[Wikipedia:Sanofi|Sanofi]], Avanir Pharmaceuticals and [[Wikipedia:Acorda Therapeutics|Acorda Therapeutics]].<ref>{{cite web|url=http://www.patientslikeme.com/about/partners|title=Partners|website=www.patientslikeme.com}}</ref>
    
==Awards and recognition==
 
==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<ref>{{cite web|url=http://www.patientslikeme.com/press/20070826|title=Business 2.0 and CNN Money Recognize PatientsLikeMe as one of its "Next Disruptors: 15 Companies That Will Change The World"|website=www.patientslikeme.com|access-date=2008-06-30|archive-url=https://web.archive.org/web/20090409113149/http://www.patientslikeme.com/press/20070826|archive-date=2009-04-09|url-status=dead}}</ref> as well as added to the list of "Top Health IT Innovators" by FierceHealthIT .<ref>{{cite web |url=http://www.fiercehealthit.com/innovators/2007/patientslikeme |title=Archived copy |access-date=2015-08-18 |url-status=dead |archive-url=https://web.archive.org/web/20140212103857/http://www.fiercehealthit.com/innovators/2007/patientslikeme |archive-date=2014-02-12 }}</ref> In 2008 PatientsLikeMe received the Prix Ars Electronica Award of Distinction <ref>{{cite web|url=http://www.aec.at/prix/en/winners/2008-prix-gewinner-digital-communities/|title=2008 Prix Winners: Digital Communities – Prix Ars Electronica|website=www.aec.at}}</ref> and in March featured in a [[New York Times Magazine]] article entitled "Practicing Patients",<ref>{{cite news| url=https://www.nytimes.com/2008/03/23/magazine/23patients-t.html?_r=2&oref=slogin | work=The New York Times | first=Thomas | last=Goetz | name-list-style = vanc | title=Practicing Patients | date=March 23, 2008}}</ref> 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]].<ref>{{cite web|url=http://www.cbsnews.com/stories/2008/12/05/eveningnews/main4651246.shtml|title=Social Networking For Medical Patients|publisher=}}</ref> [[Fast Company (magazine)]]'s 2010 list of Most Innovative Companies ranked PatientsLikeMe at #23.<ref>{{cite web | first = Erica | last = Westly | name-list-style = vanc |url= http://www.fastcompany.com/mic/2010/profile/patients-like-me |title=Fast Company's 2010 Most Innovative Companies |url-status=dead |archive-url=https://web.archive.org/web/20110713121152/http://www.fastcompany.com/mic/2010/profile/patients-like-me|archive-date=2011-07-13 | work = Fast Company | date =  17 February 2010 }}</ref> A May 2010 [[New York Times]] article entitled "When Patients Meet Online”,<ref>{{Cite news|url=https://www.nytimes.com/2010/05/30/business/30stream.html|title=When Patients Meet Online, Are There Side Effects?|journal=The New York Times|first=Natasha|last=Singer| name-list-style = vanc |date=29 May 2010|via=NYTimes.com}}</ref> 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.<ref>{{cite web | title = PatientsLikeMe and Dr. Max Little Team Up to Advance Parkinson's Research Through the Patient Voice | url = http://blog.patientslikeme.com/2012/12/03/patientslikeme-and-dr-max-little-team-up-to-advance-parkinsons-research-through-the-patient-voice/ | date = 3 December 2012 | work = PatientsLikeMe }}</ref> 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]].<ref>{{cite web |url= https://github.com/jedoublen/jeopardy/blob/master/questions/4059_Qs.txt |title=jedoublen/jeopardy |website=GitHub}}</ref> In 2016, co-founders Jamie and Ben Heywood were awarded the 2016 Humanitarian Award by the International Alliance of ALS/MND Associations.<ref>{{Cite web|url=http://news.patientslikeme.com/press-release/patientslikeme-co-founders-jamie-and-ben-heywood-win-international-alliance-alsmnd-ass|title=PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award {{!}} PatientsLikeMe|website=news.patientslikeme.com|language=en|access-date=2017-03-07}}</ref> In 2017, PatientsLikeMe was named by [[Fast Company (magazine)|Fast Company]] as one of the Top 10 Most Innovative Companies in Biotech.<ref>{{Cite news|url=https://www.fastcompany.com/most-innovative-companies/2017/sectors/biotech|title=The Most Innovative Companies of 2017 by Sector: Biotech.|work=Fast Company|access-date=2017-03-07|language=en-US}}</ref>
+
In 2007 the company was named as one of the "15 Companies that Will Change the World" by Business 2.0 and CNN Money<ref>{{cite web|url=http://www.patientslikeme.com/press/20070826|title=Business 2.0 and CNN Money Recognize PatientsLikeMe as one of its "Next Disruptors: 15 Companies That Will Change The World"|website=www.patientslikeme.com|access-date=2008-06-30|archive-url=https://web.archive.org/web/20090409113149/http://www.patientslikeme.com/press/20070826|archive-date=2009-04-09|url-status=dead}}</ref> as well as added to the list of "Top Health IT Innovators" by FierceHealthIT .<ref>{{cite web |url=http://www.fiercehealthit.com/innovators/2007/patientslikeme |title=Archived copy |access-date=2015-08-18 |url-status=dead |archive-url=https://web.archive.org/web/20140212103857/http://www.fiercehealthit.com/innovators/2007/patientslikeme |archive-date=2014-02-12 }}</ref> In 2008 PatientsLikeMe received the Prix Ars Electronica Award of Distinction <ref>{{cite web|url=http://www.aec.at/prix/en/winners/2008-prix-gewinner-digital-communities/|title=2008 Prix Winners: Digital Communities – Prix Ars Electronica|website=www.aec.at}}</ref> and in March featured in a [[Wikipedia:New York Times Magazine|New York Times Magazine]] article entitled "Practicing Patients",<ref>{{cite news| url=https://www.nytimes.com/2008/03/23/magazine/23patients-t.html?_r=2&oref=slogin | work=The New York Times | first=Thomas | last=Goetz | name-list-style = vanc | title=Practicing Patients | date=March 23, 2008}}</ref> by Thomas Goetz, who later went on to feature the site in his book "The Decision Tree". Later in 2008 a television segment with [[Wikipedia:Sanjay Gupta|Sanjay Gupta]] aired on the [[Wikipedia:CBS Evening News|CBS Evening News]].<ref>{{cite web|url=http://www.cbsnews.com/stories/2008/12/05/eveningnews/main4651246.shtml|title=Social Networking For Medical Patients|publisher=}}</ref> [[Wikipedia:Fast Company (magazine)|Fast Company (magazine)]]'s 2010 list of Most Innovative Companies ranked PatientsLikeMe at #23.<ref>{{cite web | first = Erica | last = Westly | name-list-style = vanc |url= http://www.fastcompany.com/mic/2010/profile/patients-like-me |title=Fast Company's 2010 Most Innovative Companies |url-status=dead |archive-url=https://web.archive.org/web/20110713121152/http://www.fastcompany.com/mic/2010/profile/patients-like-me|archive-date=2011-07-13 | work = Fast Company | date =  17 February 2010 }}</ref> A May 2010 [[Wikipedia:New York Times|New York Times]] article entitled "When Patients Meet Online”,<ref>{{Cite news|url=https://www.nytimes.com/2010/05/30/business/30stream.html|title=When Patients Meet Online, Are There Side Effects?|journal=The New York Times|first=Natasha|last=Singer| name-list-style = vanc |date=29 May 2010|via=NYTimes.com}}</ref> outlined the potential for advances for research. In 2012 [[Wikipedia:Sanjay Gupta|Sanjay Gupta]] featured a research project conducted in collaboration with PatientsLikeMe on CNN's The Next List, profiling collaborator Dr Max Little.<ref>{{cite web | title = PatientsLikeMe and Dr. Max Little Team Up to Advance Parkinson's Research Through the Patient Voice | url = http://blog.patientslikeme.com/2012/12/03/patientslikeme-and-dr-max-little-team-up-to-advance-parkinsons-research-through-the-patient-voice/ | date = 3 December 2012 | work = PatientsLikeMe }}</ref> In January 2013, the company featured as a clue on [[Wikipedia:Jeopardy!|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 [[Wikipedia:MIT|MIT]].<ref>{{cite web |url= https://github.com/jedoublen/jeopardy/blob/master/questions/4059_Qs.txt |title=jedoublen/jeopardy |website=GitHub}}</ref> In 2016, co-founders Jamie and Ben Heywood were awarded the 2016 Humanitarian Award by the International Alliance of ALS/MND Associations.<ref>{{Cite web|url=http://news.patientslikeme.com/press-release/patientslikeme-co-founders-jamie-and-ben-heywood-win-international-alliance-alsmnd-ass|title=PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award {{!}} PatientsLikeMe|website=news.patientslikeme.com|language=en|access-date=2017-03-07}}</ref> In 2017, PatientsLikeMe was named by [[Wikipedia:Fast Company (magazine)|Fast Company]] as one of the Top 10 Most Innovative Companies in Biotech.<ref>{{Cite news|url=https://www.fastcompany.com/most-innovative-companies/2017/sectors/biotech|title=The Most Innovative Companies of 2017 by Sector: Biotech.|work=Fast Company|access-date=2017-03-07|language=en-US}}</ref>
    
==References==
 
==References==
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[[Category:Crowdsourcing]]
 
[[Category:Crowdsourcing]]
 
[[Category:2019 mergers and acquisitions]]
 
[[Category:2019 mergers and acquisitions]]
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[[Category:Medical database]]
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[[Category:Case report]]
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[[Category:Case report database]]
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