Dermatol Ther (Heidelb) (2018) 8:405–423 https://doi.org/10.1007/s13555-018-0242-5 ORIGINAL RESEARCH Building a Citizen Pscientist: Advancing Patient- Centered Psoriasis Research by Empowering Patients as Contributors and Analysts . . . . . . Isabelle M. Sanchez Lindsey Shankle Marilyn T. Wan Ladan Aﬁﬁ Jashin J. Wu Frank Doris . . . . . . Alisha Bridges Marc Boas Brian Lafoy Sarah Truman Ana-Maria Orbai Junko Takeshita . . . Joel M. Gelfand April W. Armstrong Michael P. Siegel Wilson Liao Received: March 22, 2018 / Published online: June 6, 2018 The Author(s) 2018 analyses of the data using built-in visualization ABSTRACT tools allowing for the creation of ‘‘discovery charts.’’ These charts were posted on the CP Introduction: To design and implement a website allowing for further discussion. novel cloud-based digital platform that allows Results: As of May 2017, 3534 patients have psoriatic patients and researchers to engage in enrolled in CP and have collectively con- the research process. tributed over 200,000 data points on their Methods: Citizen Pscientist (CP) was created by health status. Patients posted 70 discovery the National Psoriasis Foundation (NPF) to charts, generating 209 discussion comments. support and educate the global psoriatic disease Conclusion: With the growing inﬂuence of the community, where patients and researchers internet and technology in society, medical have the ability to analyze data. Psoriatic research can be enhanced by crowdsourcing patients were invited to enroll in CP and con- and online patient portals. Patient discovery tribute health data to a cloud database by charts focused on the topics of psoriatic disease responding to a 59-question online survey. demographics, clinical features, environmental They were then invited to perform their own triggers, and quality of life. Patients noted that the CP platform adds to their well-being and allows them to express what research questions Enhanced digital features To view enhanced digital features for this article go to https://doi.org/10.6084/ m9.ﬁgshare.6269294. L. Shankle M. T. Wan L. Aﬁﬁ J. J. Wu I. M. Sanchez L. Aﬁﬁ W. Liao (&) F. Doris A. Bridges M. Boas B. Lafoy Department of Dermatology, University of S. Truman A.-M. Orbai J. Takeshita California San Francisco, San Francisco, USA J. M. Gelfand A. W. Armstrong e-mail: firstname.lastname@example.org M. P. Siegel W. Liao Citizen Pscientist Governance Council, National L. Shankle M. P. Siegel National Psoriasis Foundation, Portland, USA Psoriasis Foundation, Portland, USA M. T. Wan J. Takeshita J. M. Gelfand A.-M. Orbai Division of Rheumatology, Johns Hopkins Department of Dermatology, University of University School of Medicine, Baltimore, USA Pennsylvania, Philadelphia, USA J. J. Wu Department of Dermatology, Kaiser Permanente Los Angeles Medical Center, Los Angeles, USA 406 Dermatol Ther (Heidelb) (2018) 8:405–423 matter most to them in a direct and quantiﬁable tools that actively engage patients in the way. The implementation of CP is a successful research process [12–14]. Crowdsourcing solicits and novel method of allowing patients to creative ideas from paid consumers who com- engage in research. Thus, CP is an important plete a requested task. Although crowdsourcing tool to promote patient-centered psoriatic dis- in its most general sense involves non-selective ease research. participation, a major advantage of disease- speciﬁc portals is their potential for optimiza- tion of patient groups that have different needs Keywords: Clinical research; Digital; Psoriasis; than the general population [15–18]. Internet; Patient-reported outcomes; Online; There are several online portals that invite Portal; Psoriatic arthritis; Quality of life; patients to participate in the research process by Symptoms contributing health data or ideas and observing the participants’ results (Table 1). Patient- sLikeMe allows patients to share information INTRODUCTION about their disease with other participants and companies to develop improved healthcare Psoriasis is a common chronic autoimmune and tools or services, in which 5789 psoriasis inﬂammatory disease that affects the skin and causes a signiﬁcant impact on quality of life, patients are registered [19, 20]. However, data is outsourced to partner pharmaceutical and affecting approximately 2–4% of the US popu- lation [1, 2]. It is characterized by sharply clinical trials research companies, which some patients may not feel comfortable with . demarcated, scaly, and erythematous skin lesions most commonly affecting the scalp, The Global Parents for Eczema Research ana- lyzed ‘‘patient and caregiver chatter’’ from social elbows, knees, feet, and trunk. Psoriatic arthritis (PsA), depression, anxiety, physical inactivity, networks for atopic dermatitis (AD), identifying topics on topical treatments, the side effects of and social isolation may also develop, which contribute further to the social stigma and steroids, and diet . CureTogether, a website burden caused by psoriasis [3–5]. Psoriasis is also with patient-generated symptom and treatment data on skin diseases, was created in order to strongly associated with diabetes and major cardiovascular events, with excess mortality diversify participants and increase participation and has 335 enrolled psoriasis patients [23, 24]. seen in patients with psoriasis affecting 10% or more of the body surface area [6–9]. An impor- Similarly, Citizen Pscientist (CP) was devel- oped as a method of support and education for tant aspect of managing psoriatic disease is to address the psychosocial and physical symp- the psoriatic disease community. However, CP is distinct from any other crowdsourced projects toms through support, in which patients often beneﬁt from sharing their experiences with a in that patients are directly involved in their own research as both data contributors and community of psoriatic patients [3, 5]. research analysts. The CP research project was Traditionally, patients have not been inclu- created in 2015 by the National Psoriasis ded in contributing to research design and Foundation (NPF) and funded through a Pipe- analysis because of under-recognition of the value of their contributions as research partners line-to-Proposal Award from a US non-proﬁt organization, the PCORI . The objective of [10, 11]. There is a broader challenge of engag- ing patients in research that includes the lack of CP is to engage psoriasis patients in the research process, as the role of both subjects and ‘‘psci- patient expertise or involvement. If only the perspective of researchers is represented, topics entists.’’ The initiation and implementation of CP were overseen by a CP governing council of of less importance to patients may be explored, thus providing results that are of limited use. patients, psoriatic disease researchers, and NPF staff. Here, we describe a novel approach of Given increasing social media utilization and patient-driven research and share the experi- the proportion of adults that seek health infor- mation from the internet, online crowd- ence of implementing a psoriatic disease-speci- ﬁc interactive patient database through CP. sourcing platforms have become innovative Dermatol Ther (Heidelb) (2018) 8:405–423 407 Table 1 Online disease portals with network health science Project name, condition(s), (website) Innovative features Role in medical research Speciﬁc condition(s) Citizen Pscientist , psoriasis and psoriatic First organization in USA to crowdsource psoriasis Overseen by a governing council composed of in- arthritis, (www.citizenpscientist.org) and psoriatic arthritis patient information house research staff, patients, dermatology, and rheumatology researchers Consists of over 3500 members Cloud-based data set for analysis and to understand Users can analyze data and create graphs research priorities that are most important to patients Exploration of innovative hypotheses of psoriatic demographics and clinical outcomes Citizen Science , cancer, (http://www. World’s ﬁrst organization to crowdsource cancer Study showed that crowdsourcing the general public cancerresearchuk.org) research by incorporating data analysis into apps could provide accurate estrogen receptor data using and games cell images Consists of 500,000 global volunteers Project was set up on the basis of the idea that collective efforts could free up specialists’ time Creaky Joints Arthritis Power , arthritis, Arthritis Power allows patients to track symptoms, De-identiﬁed data will be analyzed by researchers to (https://arthritispower.creakyjoints.org/#one) treatment, and other health information advance personalized medicine Can be used for patients to track their symptoms over time Digital Alzheimer Center (DAC) , Alzheimer’s The ﬁrst patient portal on dementia care in the Tested the usability and usefulness of an internet disease, (https://www.alzheimercentrum.nl) Netherlands portal for patients and their caregivers Offers information on dementia to enhance social Mixed methods were used: observations of patients activities, provides support and peer-to-peer contact and caregivers while they perform prescribed tasks on the DAC; an online survey among patients and caregivers; and semistructured interviews with patients, caregivers, and healthcare professionals 408 Dermatol Ther (Heidelb) (2018) 8:405–423 Table 1 continued Project name, condition(s), (website) Innovative features Role in medical research Global Parents for Eczema Research , pediatric Developed a computer technique from Natural Analyzed 10,000 online posts and following the atopic dermatitis, (http://www. Language Processing called topic modeling to analysis by the parent/caregiver; 37 topics emerged parentsforeczemaresearch.org) summarize and analyze patient and caregiver posts from the batch—the most common topics dealt from seven online social networks with active with issues related to topical treatment such as atopic dermatitis communities, which then moisturizers and ointments, side effects of steroids, underwent human review by a parent/caregiver of and connection between AD and diet (in that AD on the team order) Precision Medicine Advances using Nationally A joint effort between Patient-Centered Outcomes Identify priorities for ideation in cardiovascular Crowdsourced Comparative Effectiveness Research Research Institute (PCORI) and the American disease research (PRANCCER) , cardiovascular disease, Heart Association that used crowdsourcing with (http://www.heart.org) input from patients, clinicians, family caregivers, and researchers Crohn & Colitis Foundation of America (CCFA) CCFA Partners is an internet-based study of patients Patients can cast up to ﬁve ‘‘votes’’ to prioritize Partners, (https://ccfa.med.unc.edu/research) with Crohn’s disease or ulcerative colitis research projects and propose new topics Patients ﬁll out a survey twice a year As of July 2017, 156 proposed questions, 1800 votes cast, 270 comments Multiple conditions CureTogether [23, 24], (http://curetogether.com) Largest available, real-world database studying 576 Emphasis on rare or underfunded diseases conditions with over 3 million data points Data on co-morbidities using only patient- 12,000 members in 112 countries contributed data Uses crowdsourcing to quantify ‘‘collective patient experience’’ Patients can report and track health outcomes (e.g., weight, pain) and connect with other users PatientsLikeMe [19, 20, 82], (https:// Members can share symptoms, treatments, health In-house research team that uses the large-scale data www.patientslikeme.com) data, and opinions for different research outcomes Dermatol Ther (Heidelb) (2018) 8:405–423 409 METHODS CP Structure and Survey A CP governing council, composed of patients, researchers, and NPF staff generated 59 initial survey questions asking about health data on demographics, family history, symptoms, dis- ease onset, psoriasis subtypes, disease severity, triggers, quality of life, associated co-morbidi- ties, and response to interventions. The CP survey followed the Checklist for Reporting Results of Internet E-Surveys (CHERRIES) reporting criteria . Patient Recruitment and Enrollment Patients were invited to enroll in CP through a website (www.citizenpscientist.org) promoted by NPF. Individuals registered on the CP portal with a valid e-mail address, which allowed for the establishment of a single user proﬁle. Elec- tronic informed consent was obtained from all participants at enrollment. Recruitment was conducted through NPF’s patient membership listserve, main website, social media outlets, the Patient Navigation Center, Psoriasis Advance magazine, and pro- motional materials used at NPF in-person events. The NPF currently has a strong social media presence for adequate marketing poten- tial, as demonstrated by 71,190 ‘‘likes’’ and 68,054 followers on Facebook, 19,700 followers on Twitter, and 2180 followers on Linked-In. Patient-Generated Data CP’s most unique aspect allows patients to explore de-identiﬁed patient-generated data and examine the relationship between any two variables from the intake survey. Such ﬁndings are posted as charts on the website, which are named ‘‘discovery charts.’’ After the results are posted online, any of the users can comment on the output. The features of openly publishing results to the CP community promote further explorations or allow patients to discuss or relate the ﬁndings to their own experiences or knowledge about their condition. Researchers, Table 1 continued Project name, condition(s), (website) Innovative features Role in medical research Public-Led Online Trials-Infrastructure and Tools, Crowdsources research ideas and health data Develop online randomized controlled trial (RCT) (http://www.ithinkwell.org) to assess shared decision-making for better health and well-being through building and testing infrastructure for valid online trials 410 Dermatol Ther (Heidelb) (2018) 8:405–423 data were included in the analysis and were speciﬁed as ‘‘no response’’ in the results table. Compliance with Ethics Guidelines Institutional review board (IRB) approval for CP was obtained from Genetic Alliance, which includes patients outside of the USA. RESULTS Patient Participation As of May 2017, there were 3534 users on the CP platform contributing over 200,000 data points. CP members were well distributed geographi- cally in the USA; there were members from every state and territory (Fig. 2). Globally, CP Fig. 1 Workﬂow process of Citizen Pscientist. The CP members were primarily from the USA, UK, Governing Council helps develop survey questions, which France, India, and Australia (Fig. 3). CP mem- the CP patients answer. This data is then stored in a de- bers were also observed from Fiji, Samoa, New identiﬁed cloud database. Then, CP patients and the Zealand, Iceland, Saudi Arabia, Singapore, Tai- psoriatic research community can analyze the data, post pei, Finland, Syria, Greece, Austria, Russia, the discoveries, and generate discussion about the ﬁndings. Caribbean, and South Africa, among others. These activities inform future survey questions and CP The activity of CP users over time is moni- initiatives tored. Unique visits to the site averaged 800 per month from May to December 2017 for a total of 6409 visits by CP users, and the highest such as those at academic universities, are also activity was in July and August. able to analyze the data (Fig. 1). The content of new survey questions can be informed by patient input. The CP governing Patient Demographics council previously published on patient priori- ties for comparative effectiveness research (CER) At baseline, 3246 (91.9%) reported having within the CP community and our survey physician-diagnosed psoriasis and 1545 (43.7%) reﬂects these topics of importance identiﬁed by reported having physician-diagnosed psoriatic patients . arthritis (Table 2). A small percentage of CP users (8.1%) did not specify psoriasis status. The Data Analysis majority of CP users are greater than 40 years of age; few users of the CP platform are below the age of 18 (1.6%). There is a female predomi- Patient demographics and clinical characteris- nance (60.9%) among the CP community with tics were tabulated by frequency using Micro- male members only representing approximately soft Excel and STATA Special Edition, version 27.3%, though 11.8% did not answer data on 14.2 (College Station, TX). Geographical data sex. The racial background of the CP commu- was analyzed using ArcGIS Online mapping nity was determined from questions on parental software (Environmental Systems Research ancestry rather than self-report of ethnicity. The Institute, Redlands, CA, USA). All patient-gen- CP membership is predominantly White/Cau- erated discovery charts up to September 2017 casian (69.6%), followed by Asian (4.9%), were analyzed for the content of topics. Missing Dermatol Ther (Heidelb) (2018) 8:405–423 411 Fig. 2 Geographical distribution of CP users in the USA, October 2017 Fig. 3 Worldwide geographical distribution of CP users, October 2017, n = 3404 Hispanic/Latino (4.5%), American Indian/Alas- Approximately 38% of CP users do not con- kan Native (3.4%), Black/African American sume alcohol, while a similar proportion report (1.7%), and Native Hawaiian/Paciﬁc Islander having six drinks or less in 1 week and a (0.3%). minority consumes more than seven drinks per 412 Dermatol Ther (Heidelb) (2018) 8:405–423 Table 2 Demographics of CP members, May 2017 Table 2 continued Member characteristic Frequency, Member characteristic Frequency, n (%) n (%) Disease Smoking (cigarettes per day) Psoriasis 3246 (91.9) 1–10 208 (5.9) Psoriasis with psoriatic arthritis 1545 (43.7) 11–20 167 (4.7) No response 288 (8.1) [ 20 57 (1.6) Age Not daily smoker 179 (5.1) Under 18 56 (1.6) Non-smoker 2365 (67.0) 18–30 383 (10.8) No response 558 (15.8) 31–40 541 (15.3) Immediate family with psoriasis 1296 (36.7) 41–50 699 (19.8) Immediate family with psoriatic 921 (26.1) 51–65 1105 (31.3) arthritis Over 65 354 (10.0) *Total sum [ 100% because of multiple responses by subjects No response 396 (11.2) Calculated using total number of subjects (n = 3534) Gender Calculated using ethnic data from both mother and father (n = 7068) Female 2151 (60.9) Male 964 (27.3) week (11%). The majority of CP users (67%) do No response 419 (11.8) not smoke, with 12.2% smoking one or more ,b cigarettes per day. Regarding family history, Racial/ethnic background* 36.7% of the CP users report an immediate White/Caucasian 4918 (69.6) family member with psoriasis and 26.1% report an immediate family member with psoriatic Asian 346 (4.9) arthritis. Hispanic/Latino 317 (4.5) American Indian/Alaskan Native 242 (3.4) Clinical Characteristics Black/African American 122 (1.7) It is well known from the literature that psori- Native Hawaiian/Paciﬁc Islander 19 (0.3) atic disease patients have an increased risk of Other 1253 (17.7) cardiovascular and autoimmune diseases [7, 28–32]. The most frequently reported No response 979 (13.9) comorbidities among the CP users include high Alcohol consumption (drinks per week) blood pressure (22.4%), high cholesterol (20.1%), high triglycerides (9.6%), sleep apnea 1–3 972 (27.5) (10.1%), thyroid disease (11.2%), and eczema/ 4–6 295 (8.3) atopic dermatitis (12.2%) (Table 3). Approxi- mately 20% of CP users report having an 7–9 191 (5.4) autoimmune-related comorbidity. One-ﬁfth of 10 or more 191 (5.4) CP users did not report any of the listed I don’t drink 1338 (37.9) comorbid conditions. Psoriasis may be divided into several clinical No response 547 (15.4) subtypes. The majority of CP users reported Dermatol Ther (Heidelb) (2018) 8:405–423 413 Table 3 Clinical characteristics of CP members, May Table 3 continued Member characteristic Frequency, n (%) Member characteristic Frequency, n (%) Erythrodermic 116 (3.3) ,a Comorbidities* Not sure 1 (\ 0.1) High blood pressure 790 (22.4) No response 294 (8.3) High cholesterol 709 (20.1) ,a Psoriasis location* Thyroid disease 396 (11.2) Scalp 2100 (59.4) Sleep apnea 357 (10.1) Arm/legs 1948 (55.1) High triglycerides 341 (9.6) Elbow/knees 1799 (50.9) Eczema/atopic dermatitis 431 (12.2) Ears 1521 (43.0) Type 2 diabetes mellitus 193 (5.5) Abdomen 1429 (40.4) Fatty liver disease 159 (4.5) Nails 1173 (33.2) Cancer 144 (4.1) Skin folds 1013 (28.7) Rheumatoid arthritis 136 (3.8) Face 932 (26.4) Coronary artery disease 87 (2.5) Genitals 854 (24.2) Uveitis 74 (2.1) Palms of hands 584 (16.5) Sjo¨gren’s syndrome 60 (1.7) Soles of feet 561 (15.9) Liver disease 48 (1.4) No response 227 (6.4) Celiac disease 49 (1.4) Psoriasis severity Crohn disease 44 (1.2) Mild: \ 5% BSA 1303 (36.9) Stroke 43 (1.2) Moderate: 5–10% BSA 1035 (29.3) Alopecia areata 31 (0.9) Severe: [ 10% BSA 540 (15.3) Lupus 27 (0.8) No response 249 (18.6) Type 1 diabetes mellitus 21 (0.6) Affected joints in psoriatic arthritis Multiple sclerosis 15 (0.4) Knuckles 823 (53.3) Cutaneous T cell lymphoma 4 (0.1) Knees 815 (52.7) Parkinson’s disease 5 (0.1) Toes 709 (45.9) Other 220 (6.2) Wrists 664 (43.0) None 675 (19.1) Spine 629 (40.7) No response 349 (9.9) Ankles 618 (40.0) ,a Psoriasis subtype* Shoulders 581 (37.6) Plaque 2459 (69.6) Hips 559 (36.2) Guttate 573 (16.2) Neck 546 (35.3) Inverse 485 (13.7) Elbows 485 (31.4) Pustular 350 (9.9) 414 Dermatol Ther (Heidelb) (2018) 8:405–423 The discovery charts posted on clinical features Table 3 continued examined, for example, which areas of the body Member characteristic Frequency, n (%) were affected by psoriasis and which areas were the most bothersome stratiﬁed by psoriatic Jaw 241 (15.6) arthritis status (Fig. 4), and which areas corre- No response 5 (0.4) lated with sleep disturbance. In addition, the frequency of comorbidities was explored among BSA body surface area different patient subsets. The subtype of psori- *Total sum[ 100% due to multiple responses by subjects asis was compared to several variables, such as Calculated using total number of subjects (n = 3534) current treatments. Calculated using total number of subjects having psori- The discovery charts that examined envi- atic arthritis (n = 1545) ronmental triggers focused on the seasonal association of ﬂares or ﬂare triggers such as having plaque psoriasis (69.6%), followed by stress, skin injury, or smoking. Alternatively, guttate (16.2%), inverse (13.7%), pustular exploration of exercise and meditation were (9.9%), and erythrodermic (3.3%) variants. The identiﬁed to reduce ﬂares. The association scalp, elbows/knees, and arms/legs were the between stress reduction and psoriasis severity most frequently reported areas with psoriatic was examined. involvement (59.4%), followed by the ears and Quality of life was explored through several abdomen (43% and 40%, respectively). Psoriasis discovery charts examining activities that are located on the face, genitals, and skin folds was prevented by psoriatic arthritis. The association in each case reported in about 25% of patients between self-consciousness and gender was while the palms and soles of the hands and feet examined, as well as discussions of overall life were reported among 17% of users. Approxi- satisfaction. mately 33% of CP users report having nail pso- riasis. In terms of psoriasis severity, 36.9% of the CP community reported less than 5% body DISCUSSION surface area (BSA) involvement, 29.3% reported 5–10% BSA, and 15.3% reported greater than CP is a powerful tool that empowers the psori- 10% BSA. Psoriatic arthritis most frequently atic disease community by allowing patients to affected the knees and knuckles (53%) followed take ownership in learning more about their by the toes, wrists, ankles, and spine (45%). disease and to contribute back through self-di- rected research. Though there have been several Participant-Generated Analysis other disease portals that rely on crowdsourcing and online forums, CP is the only one that promotes direct analysis of data by the users and A unique aspect of CP is that users can analyze openly displays this information for rapid their own data instantly online and share their patient-directed education and support. ﬁndings with other users to generate discus- Since CP attracts motivated patients who sions. As of June 2017, patients had posted 70 enroll and provide data through an online discovery charts generating 209 comments by interface, it is expected that certain groups may the CP community. To examine the content of be over-represented. Indeed, we observed a rel- these patient-generated charts, a consecutive atively high proportion of patients with psori- subset of 31 charts were further analyzed. Dis- atic arthritis (43.7%), which is toward the upper covery charts were focused on demographics or limit of an estimated range of 7–48% seen in clinical features of psoriatic disease (35%), epidemiologic studies and is higher than pop- environmental triggers (32%), and quality of ulation-based estimates of approximately 10% life (32%). The relationship of demographic [33–37]. This indicates that individuals suffering characteristics was often displayed according to from psoriatic arthritis may be more motivated psoriasis severity, such as how smoking varies to enroll in CP or that patients with more severe among those with different psoriasis severity. Dermatol Ther (Heidelb) (2018) 8:405–423 415 Fig. 4 Patient-generated analysis of most bothersome psoriasis sites. Screenshot from the CP online patient portal. Note the diverse discussion and feedback from personal experiences disease (in which the prevalence of PsA is minorities, possibly reﬂecting our advertising increased) are more motivated to enroll. Simi- that was limited to NPF members. Though larly, we observed a higher proportion of female questions about socioeconomic status were not patients, whereas large-scale epidemiological asked in the CP survey, the NPF membership studies have found no clear gender predilection from which the CP individuals were drawn from for psoriasis [2, 38]. Our results are consistent are typically of a higher educational and with the observation that women more often income status than the general population. than men engage in health information-seeking Approximately 17% of CP users reported cur- behaviors . rent smoking behaviors, which is slightly The ages of CP participants follow a skewed greater than smokers found from US population distribution favoring ages above 41. Interest- studies. According to the Centers for Disease ingly, the majority of participants are between Control and Prevention, 13.6% of women in 51 and 65 years (31.3%). The current CP com- the USA smoked compared to 16.7% of men in munity has a relatively low number of 2015 . A study analyzing data from the 416 Dermatol Ther (Heidelb) (2018) 8:405–423 Nurses’ Health Study, the Nurses’ Health Study The most common areas include the scalp, II, and the Health Professionals’ Follow-up elbows or knees, and gluteal cleft. Psoriatic Study found that current or former smokers arthritis has several different patterns of joint were more likely to develop psoriasis than involvement , and we also found a wide nonsmokers and with increased smoking dura- distribution of joint involvement among CP tion the risk for psoriasis increased . users with psoriatic arthritis, the most common Approximately 47% of the CP members report areas being the knuckles, knees, toes, wrists, alcohol consumption, with the majority con- spine, and ankles. suming 1–3 drinks per week (27.5%) and only a The patient-centered discoveries of CP add minority reporting greater than 10 drinks per value to psoriasis knowledge by showing what week (5.4%). Alcohol abuse has been associated patients consider important about their disease. with a greater risk for developing or worsening The current literature is sparse for these high- psoriasis . Overall, the low prevalence of priority topics identiﬁed by psoriasis patients. alcohol use among the CP community may be There are six studies that discuss environmental due to the female predominance, as women are triggers of psoriasis [58–63], while 10 articles less likely to be alcohol misusers , and that explore the seasonality of psoriasis [64–73]. patients who participate in the CP initiative These articles do not provide clear answers, may may be also less likely to engage in alcohol be resource-intensive to develop, and might consumption. Within the CP community, 37% have limited quality in the setting of con- of members reported at least one immediate founding variables. Thus, there is an opportu- family member with psoriasis. This is consistent nity for the CP platform to ﬁll these gaps of with studies showing that approximately 40% highly prioritized topics for psoriasis patients. of patients with psoriasis or psoriatic arthritis CP may redirect researchers to focus on have a family history of these disorders in ﬁrst- studying disease factors that are the most degree relatives . important to patients. Furthermore, CP’s inﬂu- The high rate of disorders of impaired ence on research has the potential for enabling metabolism among the CP community is con- researchers and physicians to connect with sistent with previous studies demonstrating a ongoing questions generated by patients. For greater likelihood of obesity, hypertension, example, a survey that ranked the patient’s top hypertriglyceridemia, hypercholesterolemia, priority CER topics showed that the following diabetes, and sleep apnea [45–51]. In addition, were the highest importance to CP patients: 20% of CP users reported an autoimmune-re- comparing the effectiveness, safety, risk, and lated comorbidity consistent with prior studies costs of treatment; diet or remedies; and com- detecting an increased autoimmune disease munication or management strategies. Speciﬁ- prevalence among patients with psoriasis and cally, the most popular CER questions were PsA such as uveitis, alopecia areata, celiac dis- comparing biologics to methotrexate, treat-to- ease, systemic sclerosis, and Crohn disease target management for psoriasis, comparisons [32, 52, 53]. of home versus ofﬁce-based phototherapy, and The type, severity, and location of psoriasis differences between scalp psoriasis treatment reported among the CP users are parallel to formulations . Although patient–physician ﬁndings in the literature, with the exception of communication is important in determining pustular psoriasis occurring twice higher than patient needs, direct feedback from CP is valu- expected. Chronic plaque psoriasis is the most able information for guiding future research common variant of psoriasis with the literature efforts and patient care . reporting 55–79% of patients with psoriasis Another unique aspect of CP is that messages identiﬁed as the plaque type [54, 55]. The can be posted by participants in response to the majority of CP patients with psoriasis have displayed discovery charts, which may result in moderate to severe disease, while population- further discussion and analysis. For example, a based estimates have suggested that about 20% data-driven discussion debated whether the have moderate to severe psoriatic disease . observed results had statistical signiﬁcance. As a Dermatol Ther (Heidelb) (2018) 8:405–423 417 result of the high interest in the debated topic, Limitations researchers may consider following up on the discussion points raised by the users. With this interactive data tool, however, there The initial efforts of CP were focused in the is a risk of misinterpretation of the results by USA, as recruitment was implemented through the CP users. For example, a comment was the NPF. However, we were surprised by the posted to a discovery chart stating that ﬁzzy reach of the CP platform to countries outside of drinks and sugar could help psoriasis, which the USA. As the number of international par- was the opposite interpretation of what the ticipants continues to increase, we will translate results displayed. Future enhancements to the the survey to other languages. The fact that the platform could consider a dermatologist or intake survey and CP website are in English and research moderator to help users understand from a US-based website may also contribute to the results correctly. It is also possible that an the limited diversity of the subjects in our analysis led by patients could induce potential summarized results. conﬂicts of interests and biases that could Additionally, the activity of CP by users has favor inaccurate but desired health outcomes. remained high over time, with the most active Therefore, the CP discovery graphs must be months during the Summer. The average of 800 interpreted with caution. visits per month and total unique visits of 6409 Self-reported data may not provide accurate in 2017 suggest that users may be visiting the information, especially when examining clini- site multiple times, as the visits exceed the total cal factors in comparison to deriving health count of registered CP users. information from electronic health records. Psoriasis patients have expressed that CP However, more insight into patient priorities adds signiﬁcant value to their view of research, and a wider variety of patients are reached their general psoriasis knowledge, and their when mining CP crowdsourced data. A corre- well-being. One member stated that CP is lation between self-administered scoring of valuable because it gives patients the ability to disease severity to physician-generated clinical be part of the effort to ﬁnd a cure. Even though measures of psoriasis severity using the Psori- discussion groups and online forums are valu- asis Area Severity Index (PASI) has been able in letting patients share their experiences reported, although a review of patient-reported with others, CP is unique in that patients can outcomes determined that most do not assess inﬂuence the direction of future research. It lets validity [75–77]. In our study, 91.9% of CP researchers know what questions matter the enrollees reported a physician-made diagnosis most to patients in a direct and quantiﬁable of psoriasis, but it is unclear if the remainder way. In addition, patients stated that CP is received a diagnosis of psoriasis from a differ- valuable because it lets them know ent kind of provider or self-diagnosed their what other patients’ concerns are by means of condition. quantiﬁable information in the form of easy-to- To improve the reliability of CP patient- read and easy-to-understand charts and graphs. generated data, a validation of the self-reported They get an instant picture of other patients’ diagnoses through a review of patient medical concerns and trends in the entire community’s records will be performed by CP researchers. response to survey questions. Another CP After 10% of our total CP patients are sampled member shared the fact that awareness of and consented, their physicians will be asked to overlapping disease features between patients provide documentation of medical records that reﬁnes patients’ understanding of psoriasis fur- support or refute a patient’s psoriasis diagnosis. ther. Importantly, CP emphasizes to those liv- As more robust data is generated by CP, the NPF ing with psoriasis that they are not alone. researchers will conduct a more formal analysis Individuals can anonymously share their of summary data. toughest moments experiencing psoriasis, which can be translated into impactful science. 418 Dermatol Ther (Heidelb) (2018) 8:405–423 Authorship. All named authors meet the CONCLUSIONS International Committee of Medical Journal Editors (ICMJE) criteria for authorship for this CP is a unique research platform that encour- article, take responsibility for the integrity of ages meaningful data exchange for psoriatic the work as a whole, and have given their disease research. Other patient portals have approval for this version to be published. used crowdsourced research for science inno- vation; however, none, to our knowledge, have Disclosures. Isabelle M. Sanchez, Marilyn T. integrated patients into the research develop- Wan, Ladan Aﬁﬁ, Frank Doris, Alisha Bridges, ment or analysis process. Patient-generated Marc Boas, Brian Lafoy, and Sarah Truman have analyses in CP have demonstrated interest in nothing to disclose. Wilson Liao is funded in demographics and clinical features of psoriasis, part by grants from the National Institutes of followed by environmental triggers and sea- Health (R01AR065174, U01AI119125) and has sonality, indicating that the patient perspective served as a research investigator for Abbvie, can help guide future research areas. Janssen, Novartis, and Pﬁzer. Lindsey Shankle is Future efforts to enhance CP will focus on employed by the National Psoriasis Foundation. several areas. One priority is recruitment of a The Foundation receives unrestricted ﬁnancial more racially diverse population through com- support from AbbVie, Inc, Amgen, Inc, Celgene prehensive outreach methods. Another priority Corporation, Eli Lilly and Co, Janssen Biotech, is maintaining the engagement of users, Inc, LEO Pharma Inc, Mallinckrodt Pharma- through new survey questions and by expand- ceuticals, Novartis Pharmaceuticals, Pﬁzer, Inc, ing the interface to a mobile application. A and Valeant Pharmaceuticals International, Inc. subset of the CP data is currently being vali- Michael P. Siegel is employed by the National dated with medical records to assess the accu- Psoriasis Foundation. The Foundation receives racy and quality of the self-reported unrestricted ﬁnancial support from AbbVie, Inc, information. Finally, the addition of real-time Amgen, Inc, Celgene Corporation, Eli Lilly and activity, ﬁtness tracking, and DNA or other Co, Janssen Biotech, Inc, LEO Pharma Inc, biospecimens may also be explored. In these Mallinckrodt Pharmaceuticals, Novartis Phar- ways, CP can continue to contribute to patient- maceuticals, Pﬁzer, Inc, and Valeant Pharma- centered research that improves the quality of ceuticals International, Inc. April W. Armstrong life of psoriatic patients globally. has served as investigator, advisor, and/or con- sultant to AbbVie, Janssen, Novartis, Lilly, Regeneron, Sanoﬁ, and Ortho Dermatologics. ACKNOWLEDGMENTS Joel M. Gelfand is funded by NIAMS K24AR064310 and has served as a consultant for We are grateful to the many patients who have BMS, Coherus (DSMB), Dermira, GSK, Janssen contributed to the CP initiative. We are thank- Biologics, Menlo Therapeutics, Novartis Corp, ful for the CP patients who participated in study Regeneron, Dr. Reddy’s labs, Sanoﬁ, and Pﬁzer design and implementation. These patients Inc., receiving honoraria; and receives research continue to contribute valuable feedback and grants (to the Trustees of the University of improvements to CP as active members of our Pennsylvania) from Abbvie, Janssen, Novartis CP governing council. Corp, Regeneron, Sanoﬁ, Celgene, and Pﬁzer Inc.; and received payment for continuing Funding. The development of CP was fun- medical education work related to psoriasis that ded by the National Psoriasis Foundation and was supported indirectly by Lilly, Valeant, and by a Patient-Centered Outcomes Research Abbvie. Joel M. Gelfand is also a co-patent Institute (PCORI) Pipeline-to-Proposal Award. holder of resiquimod for treatment of cuta- No funding was received for publication of this neous T cell lymphoma. Junko Takeshita is article. supported by NIAMS K23-AR068433. Junko Takeshita also receives a research grant from Dermatol Ther (Heidelb) (2018) 8:405–423 419 2. Rachakonda TD, Schupp CW, Armstrong AW. Pso- Pﬁzer Inc (to the Trustees of the University of riasis prevalence among adults in the United States. Pennsylvania) and has received payment for J Am Acad Dermatol. 2014;70(3):512–6. https://doi. continuing medical education work related to org/10.1016/j.jaad.2013.11.013. psoriasis that was supported indirectly by Eli 3. Bewley A, Burrage DM, Ersser SJ, Hansen M, Ward Lilly and Novartis. Ana-Maria Orbai is funded in C. Identifying individual psychosocial and adher- part by grants from the National Institutes of ence support needs in patients with psoriasis: a Health (P30 AR070254-01), the Rheumatology multinational two-stage qualitative and quantita- Research Foundation (RRF Scientist Develop- tive study. J Eur Acad Dermatol Venereol. 2014;28(6):763–70. https://doi.org/10.1111/jdv. ment Award), and the Staurulakis Discovery Award. Ana-Maria Orbai has served as an investigator and received research funding (to 4. Takeshita J, Grewal S, Langan SM, et al. Psoriasis Johns Hopkins University) from Abbvie, Cel- and comorbid diseases: epidemiology. J Am Acad Dermatol. 2017;76(3):377–90. https://doi.org/10. gene, Janssen, Horizon, Eli Lilly, and Novartis. 1016/j.jaad.2016.07.064. In addition, A.M.O. has also served as a con- sultant for Eli Lilly, Janssen, Novartis, Pﬁzer, 5. Balato N, Megna M, Palmisano F, et al. Psoriasis and and UCB. Jashin J. Wu is an investigator for sport: a new ally? J Eur Acad Dermatol Venereol. AbbVie, Amgen, Eli Lilly, Janssen, Novartis, and 2015;29(3):515–20. https://doi.org/10.1111/jdv. Regeneron. 6. Azfar RS, Seminara NM, Shin DB, Troxel AB, Mar- Compliance with Ethics Guidelines. IRB golis DJ, Gelfand JM. Increased risk of diabetes approval for CP was obtained from Genetic mellitus and likelihood of receiving diabetes melli- tus treatment in patients with psoriasis. Arch Der- Alliance, which includes patients outside of the matol. 2012;148(9):995–1000. https://doi.org/10. USA. 1001/archdermatol.2012.1401. Data Availability. The data sets generated 7. Gelfand JM, Neimann AL, Shin DB, Wang X, Mar- golis DJ, Troxel AB. Risk of myocardial infarction in and/or analyzed during the current study are patients with psoriasis. JAMA. available from the NPF on reasonable request. 2006;296(14):1735–41. https://doi.org/10.1001/ Please contact the corresponding author for jama.296.14.1735. more information. 8. Noe MH, Shin DB, Wan MT, Gelfand JM. Objective measures of psoriasis severity predict mortality: a Open Access. This article is distributed prospective population-based cohort study. J Invest under the terms of the Creative Commons Dermatol. 2017. https://doi.org/10.1016/j.jid.2017. Attribution-NonCommercial 4.0 International 07.841. License (http://creativecommons.org/licenses/ 9. Wan MT, Shin DB, Hubbard RA, Noe MH, Mehta by-nc/4.0/), which permits any noncommer- NN, Gelfand JM. 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