IntroductionPatientsLikeMe is an online patient network where people can connect with each other to betterunderstand their...
We have over seven years of experience helping more than 180,000 patients find each other using ouradvanced patient search...
Fig 1.3 Screenshot of Current Clinical Trials Tool search boxIn addition to the ability to save searches, several features...
•   Broadened accessibility through:          o Improved language support          o Mobile access and device independence...
While Contract Research Organizations have created business processes to support industrycustomers assessing pharmaceutica...
interfaces in either a simplified format or as a series of search options, rather than enclosing allinformation on the ini...
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Pcori health 2.0 challenge with screenshots_patients_likeme_041513


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Pcori health 2.0 challenge with screenshots_patients_likeme_041513

  1. 1. IntroductionPatientsLikeMe is an online patient network where people can connect with each other to betterunderstand their health conditions, share condition and treatment information, and get the support theyneed to improve their health outcomes.PatientsLikeMe is also a real-time research platform where patients provide real-world insight into theirexperiences of living with and managing illness using clinically relevant tools to monitor symptoms andoutcomes, evaluate interventions, share their experiences, learn from others, and contribute to andparticipate in research that matters to them.Since our founding in 2004 we have actively engaged with patients to do research differently. Ourinnovative network was built upon four core values and they continue to shape every decision wemake. • Honor the trust patient place in us - Simply stated, this means “Patients First.” Our patients trust us with their most valued health information and we honor that trust by advancing the knowledge gained from this information. • Openness - We believe that sharing health information is good because it has the potential to drive massive change in healthcare. • Transparency - We believe our patient members shouldn’t be surprised by anything we do with the data they entrust to us. • Create Wow - We want people to think, “Wow!” when they experience our site.PCORI Patient-Researcher Matching ChallengeConnecting Patients to Each Other: Our Patients PagePatientsLikeMe is uniquely positioned to address the matching challenge posed by the Patient-Centered Outcomes Research Institute (PCORI) and Health 2.0. As a world leader in patient-poweredresearch networks we have the experience, knowledge and demonstrated expertise to connectpatients, clinicians and researchers in new era of healthcare measurement.Fig 1.1 Screenshot of Patient Page 155 second street • cambridge, ma 02141 • 617.499.4003
  2. 2. We have over seven years of experience helping more than 180,000 patients find each other using ouradvanced patient search tool available on our Patients Page. Filters for numerous variables searchthrough our comprehensive database of over 1500 conditions, 7000 symptoms, 14,000 treatments andnearly 90,000 treatment evaluations.Connecting Researchers to Patients: Our Clinical Trial Awareness CampaignsOur Clinical Trial Awareness program has transformed the traditional clinical trial recruiting process foracademic and industry research partners. We work with our partners to build a campaign that reachesthousands of patients about relevant clinical trial opportunities. We develop tailored communications topatients who qualify for the targeted study. Since 2008 PatientsLikeMe has reached more than100,000 patients through 30 customized Clinical Trial Awareness Campaigns.From our PatientsLikeMe Partners dashboard any researcher can determine how many individuals onthe platform might be eligible for their trial based on the NCT trial number. Currently our fee-basedClinical Trial Awareness program provides services to commercial, non-profit, and academic clientsinterested in improving awareness of and enrollment into their trials.Fig 1.2 Screenshot of Clinical Trial Awareness pageConnecting Patients to Researchers: Our Global Clinical Trials ToolIn 2011 we launched a feature that helps patient find research studies that are right for them. OurClinical Trial Tool, which updates daily with all the trial information listed on ClinicalTrials.govautomatically matches patient members with every clinical trial they may be eligible for based on theirconditions and location. This award winning application is also available to non-patient members whocan use the sophisticated filtering system to narrow their options.Recently, we unveiled our global clinical trials tool at Europe’s Healthcare Innovation Expo, hosted bythe National Health Service. Our Clinical Trials Tool is now the best international database of eligibletrials that incorporates support through an open Application Platform Interface (API).This upgrade draws on open data to match patients from around the globe with relevant researchstudies. It extracts data regarding trial criteria, relevant conditions, type of intervention, stage of trial,and recruitment locations. Access does not require an account at PatientsLikeMe, but patient memberswho log in to the site can create custom searches and save them for future use. When they return tothe Clinical Trials Tool, they receive an updated list of trials specific to their saved search criteria thathave been updated. 155 second street • cambridge, ma 02141 • 617.499.4003
  3. 3. Fig 1.3 Screenshot of Current Clinical Trials Tool search boxIn addition to the ability to save searches, several features of the Clinical Trials Tool are notableupgrades from the search functionality presented through site. When patientmembers explore clinical trials relevant to them, they can determine how many other members ofPatientsLikeMe may be eligible for the same trial.To date, a number of users have reported that the Clinical Trials Tool has enabled them to locate andparticipate in a trial near them. While PatientsLikeMe does not track individuals who reach out to a trialrecruitment center, over 7,000 users have requested further details on a given trial after their initialsearch. Potential improvements to the tool could address benefit accessibility, capabilities, awarenessin the researcher and patient communities, as well as the overall practice of research and recruitment.Of particular interest is the ability to identify improvements to research messaging and studyrecruitment content.Next Generation ImprovementsMatching Patients to Researchers: Our Reimagination ProposalPatientsLikeMe has the demonstrated experience and expertise needed to reimagine our innovativetechnology to meet the PCORI and Health 2.0 Challenge. We have a track record of collaboration withresearchers interested in decreasing barriers to research participation and improving access to clinicaltrials and research studies. Additionally, PatientsLikeMe are leaders in deploying patient-centrictechnologies on the web.We propose a series of improvements built upon our current matching functionality of our PatientsPage, our Clinical Trials Awareness Campaign and our global Clinical Trials Tool. We imagine anenvironment that supports interaction and bidirectional communication among patients, clinicians andresearchers while providing an innovative, elegant and robust patient – researcher matching tool.Our approach will be informed by all stakeholders and will include: • Improvements to clinical trial search as described in detail below • Identification and closing of preference gaps between patients and researchers • Harmonization of clinical jargon and the “patient voice” • Tools for researchers to identify not just populations of patients eligible for research studies but also priorities of patients for participating in the studies 155 second street • cambridge, ma 02141 • 617.499.4003
  4. 4. • Broadened accessibility through: o Improved language support o Mobile access and device independence o Enhanced smartphone enabled navigation to study location o Platform independence through improved awareness of our reimagined patient- researcher matching toolPatient Goals and Patient VoiceHaving acquired a set of information on the clinical trial searches users create and save, we can usethis information to test methods for research study searches that are enabled by patient preferencesand the patient voice. Currently, searches prompt for disease, location, gender, and age. In addition,patients can indicate trial stage, type of intervention, and search by keyword. These additional featuresare not immediately obvious to patients but may, in fact, be of greater relevance. We will examine whatfeatures patients consider to be most relevant in their study searches, and the differences in evaluatingand potentially joining a study dependent on type of search, basic or advanced, and criteria searchedfor. Based on this information, PatientsLikeMe can reprioritize components of the search functionalityand offer patients a more in-depth experience driven by identified priorities. For example, phase of trialmay be a feature that is of critical importance from a patient perspective and should be immediatelyincluded in a given search to maximize the value of search results.PatientsLikeMe has done an extensive amount of work in simplifying medical information andeliminating jargon, as well as retaining the option for a patient to describe a disease in the manner mostfamiliar to them. One method to support this has been the creation of a “patient voice” ontology,mapping frequently used terms from patient communities into common data elements. For example,PatientsLikeMe supports searching for information regarding amyotrophic lateral sclerosis (ALS)whether a patient refers to the disease by its full name, as ALS, as Lou Gehrig’s Disease, or as MotorNeuron Disease or MND. PatientsLikeMe will improve capabilities to remap trial data into this ontologyas well, enabling patients using a less-familiar term for a disease or an incompatible term for theirdisease to still determine which trials they may be eligible for.Additionally, PatientsLikeMe will examine search histories, saved searches, and behavior of those whohave sought additional information on a trial to determine which studies they have found most relevantwhen engaging in search. By identifying these “successful” trials, PatientsLikeMe can examine whatinformation in a trial description may be most interesting to a patient looking to participate in a trial thatimpels them to seek additional information about that trial. PatientsLikeMe can use this data to informother patients with similar characteristics. For example, if a high number of male patients between 30-40 years old with multiple sclerosis have sought additional information about a specific set of studies,PatientsLikeMe can indicate that these are popular results.Support for ResearchersIn addition to identifying populations of interest, we can build broader researcher support into a patient -researcher matching tool. By identifying study features of interest to patients, we can build a set ofcommon search terms used by individuals seeking studies in order to inform researchers writingrecruitment messages and providing study information to Additionally,PatientsLikeMe can build a study form submission structure that simplifies submission and allows for peer-production of recruitment messaging between researchers.Exploration of past search data can highlight terms of significance to patients that may not be obviousto researchers. These terms can be used to identify potential mismatches in patient goals vis a vis thegoals of researchers designing both studies and recruitment messages. A database of the highperforming or frequently accessed study descriptions would be immediately informative to researchersstruggling to identify the challenges most relevant to patients. 155 second street • cambridge, ma 02141 • 617.499.4003
  5. 5. While Contract Research Organizations have created business processes to support industrycustomers assessing pharmaceutical, diagnostic, and device interventions, there is a dearth ofprofessional support for academic customers as well as organizations interested in less mechanisticinterventions around topics such as workflow improvements, patient engagement, or similarapproaches. PatientsLikeMe proposes creating a quick-start interface that can assist researchersinterested in these research approaches to create a study description for submission This would involve not only assessing current requirements butalso creating a taxonomy for describing non-device or treatment agent based interventions outside ofthe Stage 1, Stage 2, Stage 3 nomenclature.PatientsLikeMe is founded on the concept of collaboration between clinicians, researchers, andpatients. We believe that environments where individuals can learn from their peers improve outcomesacross a number of spaces, including how to best solicit participation in research studies. Currently,PatientsLikeMe is building the architecture for patients and researchers to collaborate on the creation ofPatient-Reported Outcomes Measures. We envision the potential for a similar collaborativeenvironment for study recruitment messages. Investigators could pose draft language to a cohort ofboth peers and potentially interested patients and receive feedback on salient points, resonantlanguage, and more patient-meaningful measures and endpoints. Our community includes nearly200,000 patients with over 1,500 medical conditions, and many patient members are looking for placeswhere their input can enable the healthcare and medical research system to flourish and reach the fullpotential of a continuously learning health system.Language AccessLanguage access is a more difficult challenge. Research study descriptions are frequently jargonisticand use numerous medical terms. Beyond issues of simple terminology translation, there are additionallevels of difficulty that arise from health literacy levels. While we envision that a researcher study guidecould lower some of these barriers, computational linguistics currently do not offer any ready-madesolutions for translating medical jargon into foreign languages. PatientsLikeMe will strive to include themost up-to-date translation tools and advocate for clinical trial messaging that is relevant across healthliteracy levels.Mobile DevelopmentWe envision two strategies for continued mobile development. Currently, the Clinical Trials Tool isavailable in mobile browsers but is not optimized for mobile devices and tablets. We propose optimizingthe current Clinical Trials Tool for use on mobile browsers as well as building a standalone anapplication (app) with capabilities enriched by access to the device’s location data. We believe thismulti-device approach will expand the Tool’s research and provide better patient-resaerch studymatching.Mobile health technology has yet to attain broad dissemination in the public. Only twenty percent ofsmartphone users report downloading a health-related app. The vast majority of health appsdownloaded by users are fitness apps, with chronic condition disease management apps making up asmall (2%) percentage of total downloads (source: 2012 study by the Pew Internet and American LifeProject). Health information provisioning apps are an additional minor subset. The WebMD app has thehighest penetration among these apps, at four percent. Slightly more than thirty percent of allsmartphone users, on the other hand, report using the Internet on their mobile phone to search forhealth information.Because mobile browsing for health has higher penetration than standalone mobile apps for health, themost immediate means to improve accessibility is through optimizing the our matching tool for mobilebrowsers. Mobile users, by default, inform websites that they are accessing those platforms via amobile browser. PatientsLikeMe will offer a website that renders the search engine and corresponding 155 second street • cambridge, ma 02141 • 617.499.4003
  6. 6. interfaces in either a simplified format or as a series of search options, rather than enclosing allinformation on the initial page.The most critical reasons to create a standalone “app” versus optimizing a website for a mobile deviceare accessing geospatial location data and better matching the ways by which mobile and tablet usersinteract with the Internet through these devices. PatientsLikeMe proposes constructing a patient –researcher matching tool that leverages geospatial data on the user end to populate a more appropriatelist of nearby studies and provide navigation to them. Additionally, a more simplified user experiencecould be presented in a stand-alone app versus the limits imposed by mobile browsing.Conclusions: Technology Creation v. Technology ProliferationOne of the greatest challenges in the use of the technology has less to do with the design of technologyor the writing of lines of code and more to do with building awareness that technology exists.Frequently, the assumption is made that individuals interested in their care will exhaustively seek outeffective solutions (i.e., if we build it, they will come). Systems created by researchers, specifically, mayaptly or effectively encapsulate a problem and create a well-posed solution, but not transition beyondinitial stages of implementation or demonstration of efficacy.To that extent, we would propose that any further development of our Clinical Trials Tool into areimagined patient - research matching tool be accompanied by a broad messaging campaign withfinancial support from PCORI. Currently, the Clinical Trials Tool is a component of PatientsLikeMe’splatform, but it is not immediately obvious to members accessing the site for the first time. Additionally,capabilities for researchers are not immediately obvious to potential collaborators. We would hope toengage with PCORI to build awareness of these resources across both funded PCORI researchers andthe broader research community. There is no need to reinvent the wheel and build search interfaceafter search interface on top of publicly available data. We believe that it is more apt to focus onincremental search improvements and increased capabilities of existing resources that have beendemonstrated as valuable to the patient and researcher communities in more limited contexts and seekto expand their reach to meet patients and researchers in their lives and work flow. 155 second street • cambridge, ma 02141 • 617.499.4003