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Citters - Point-of-care dashboards promote coproduction

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preface_schema: ‘1.0’ title: ‘inflammatory bowel disease’ source_type: ‘Academic’ publisher: ‘Ey’ publishing_date: ‘2021’ authors: [‘MEGAN M. HOLTHOFF’, ‘ALICE M. KENNEDY’, ‘GIL Y. MELMED’, ‘RIDHIMA OBERAI’, ‘COREY A. SIEGEL’, ‘ALANDRA WEAVER’, ‘EUGENE C. NELSON’, ‘Clinical Practice’, ‘Translational Research Building’, ‘Level 5 One Medical Center Drive’, ‘Liver Diseases’, ‘Inflammatory Bowel’] available_at: ‘https://doi.org/10.1093/intqhc/mzab067’ keywords: [‘health’, ‘dashboard’, ‘patients’, ‘care’, ‘support’, ‘visit’, ‘shared’, ‘coproduction’] abstract: ‘Background: Coproduction of healthcare services by patients and professionals is seen as an increasingly important mechanism to support person-centred care delivery. Coproduction invites a deeper understanding of what persons sometimes called ‘patients’ bring to development of a service. Yet, little is known about tools that may help elicit that information. Objective: Our objective was to explore potential benefits and limitations of an electronic pre-visit survey (PVS) and dashboard by studying uptake and experiences within the inflammatory bowel disease (IBD) community.‘

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xplore potential benefits and limitations of an electronic pre-visit survey (PVS) and dashboard by studying uptake and experiences within the inflammatory bowel disease (IBD) community.‘

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International Journal for Quality in Health Care, 2021, 33(S2), ii40–ii47 doi: https://doi.org/10.1093/intqhc/mzab067 Point-of-care dashboards promote coproduction of healthcare services for patients with inflammatory bowel disease ARICCA D. VAN CITTERS1, MEGAN M. HOLTHOFF1, ALICE M. KENNEDY1, GIL Y. MELMED2, RIDHIMA OBERAI3, COREY A. SIEGEL4, ALANDRA WEAVER3, and EUGENE C. NELSON1 1The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth, Williamson Translational Research Building, Level 5 One Medical Center Drive, Lebanon, NH 03766, USA, 2Division of Digestive and Liver Diseases, Department of Medicine, Inflammatory Bowel and Immunobiology Research Institute, Cedar Sinai Medical Center, Los Angeles, CA 90048, USA, 3Crohn’s and Colitis Foundation, 733 Third Ave, Suite 510, New York, NY 10017, USA, and 4Inflammatory Bowel Disease Center, Section of Gastroenterology and Hepatology, Dartmouth- Hitchcock Medical Center, Lebanon, NH USA Address reprint requests to: Aricca D. Van Citters, The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth, Williamson Translational Research Building, Level 5 One Medical Center Drive, Lebanon, NH 03766 USA. E-mail: Aricca.D.Van.Citters@Dartmouth.edu Received 13 January 2021; Editorial Decision 31 March 2021; Revised 18 March 2021; Accepted 15 April 2021 Abstract Background: Coproduction of healthcare services by patients and professionals is seen as an increasingly important mechanism to support person-centred care delivery. Coproduction invites a deeper understanding of what persons sometimes called ‘patients’ bring to development of a service. Yet, little is known about tools that may help elicit that information. Objective: Our o

vites a deeper understanding of what persons sometimes called ‘patients’ bring to development of a service. Yet, little is known about tools that may help elicit that information. Objective: Our objective was to explore potential benefits and limitations of an electronic pre-visit survey (PVS) and dashboard by studying uptake and experiences within the inflammatory bowel disease (IBD) community. Methods: We conducted a mixed-method evaluation of patients and clinicians using the IBD Qorus PVS and dashboard at 24 programmes participating in the IBD Qorus learning health system. We analysed (i) descriptive statistics and thematic analyses of 537 patient surveys, (ii) semi-structured interviews with seven patients and six care teams and (iii) usage data collected between 25 March 2019 and 26 April 2020. Results: Nearly two-thirds (64%; n = 38) of clinicians enrolled ≥25 patients into IBD Qorus; 59% (n = 29) of clinicians received ≥25 electronic PVS, with 3834 PVS received during the study period. Post-visit evaluation surveys were completed by patients following 26% (n = 993) of PVS comple- tions. Among patients who reported using the dashboard for 1 or more months (n = 537), two-thirds (65%, n = 344) used the dashboard at a clinic visit and one-third used it outside the clinic (33%, n = 176). Most patients who used the dashboard during a clinic visit said it was helpful in discus- sions with their clinician (82%), in talking about what matters most (76%) and in making healthcare decisions (71%). Patients using the dashboard during the clinic visit reported higher levels of shared decision-making than those who did not use the dashboard (82% vs. 65%, P < 0.001). This rela- tionship remained significant after controlling for receipt of care at a clinic with the highest levels of patient-reported shared decision-making (odds ratio: 2.1; confidence interval: 1.3–3.3). Patients and clinicians found the greatest value in using the PVS and dashboard to share concer

est levels of patient-reported shared decision-making (odds ratio: 2.1; confidence interval: 1.3–3.3). Patients and clinicians found the greatest value in using the PVS and dashboard to share concerns and © The Author(s) 2021. Published by Oxford University Press on behalf of International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com ii40

[Image 1]: The image shows the logo of the International Society for Quality in Health Care. It features a gray wing - shaped graphic on the left, the text “ISQua” in large gray letters, and the full organization name in smaller gray font below. The logo is set against a plain white background with no additional elements.

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• ii41 symptoms, prepare for a visit and support discussions during the visit. The lack of integration with existing electronic health records (EHRs) limited clinician usage of the PVS and dashboard. Conclusions: The PVS and dashboard created a shared language, which supported coproduction and shared decision-making and facilitated a shared understanding of goals, concerns, symp- toms and well-being. To support uptake, future systems should reduce implementation burden for healthcare professionals and integrate seamlessly with existing EHR systems and workflows. Key words: coproduction, dashboard, patient-centred care, shared decision-making, digestive diseases, inflammatory bowel disease, information technology Introduction Coproduction of healthcare services is increasingly seen as a mecha- nism to support person-centred care delivery. It invites attention to partnerships and shared decision-making in areas that matter most to patients [1–4]. Evidence suggests that health is improved when patients and clinicians coproduce healthcare plans based on their preferences, concerns and best scientific evidence [5, 6]. An enriched information environment that highlights patient and clinician goals, concerns and health

oproduce healthcare plans based on their preferences, concerns and best scientific evidence [5, 6]. An enriched information environment that highlights patient and clinician goals, concerns and health status over time has the poten- tial to support coproduction of healthcare services [1–3, 7–9]. Health information can be visualized in a patient-level, point-of-care dash- board [9–14], allowing patients and clinicians to jointly assess health status and previous treatments, determine next steps based on the patient’s concerns and stressors, and design a plan of care to best address the patient’s goals, context and capabilities [2]. When sit- uated within a learning health system (LHS), data captured prior to a clinic visit and fed-forward for use during visits can support achieving optimal health for individual patients and enhance quality improvement initiatives and research [13–15]. The IBD Qorus LHS, a consortium of academic and community- based practices that aims to improve quality of care for inflammatory bowel disease (IBD) patients [12, 16, 17], uses an electronic pre- visit survey (PVS) and dashboard to support sharing of patient- and clinician-reported information. Our objective was to explore poten- tial benefits and limitations of an electronic PVS and dashboard by studying uptake and experiences within the IBD Qorus LHS. Methods Design and build Clinician leaders within the Crohn’s & Colitis Foundation’s IBD Qorus LHS [12, 16, 17] developed a PVS to support shared decision- making and guide research and quality improvement. The PVS included questions about current symptoms, disease activity, health- care utilization and an open-ended question regarding the patient’s number one concern or goal related to IBD. A dashboard was developed that would immediately display PVS responses alongside clinical information, such as the physi- cian’s global assessment of disease severity, diagnostic classifi- cation, treatments and laboratory results

ould immediately display PVS responses alongside clinical information, such as the physi- cian’s global assessment of disease severity, diagnostic classifi- cation, treatments and laboratory results. The dashboard was designed by gastroenterologists, with enhancements driven by feed- back from patient and clinician users. Commercial health infor- mation technology (HIT) vendors built the electronic PVS and dashboard using a Salesforce Platform. To support use across the LHS, the dashboard was not integrated within the electronic health record (EHR). The dashboard was designed to optimize the clinical visit and primarily intended to be used in the context of a visit. Functions included (i) tracking and displaying patient-reported health sta- tus, health-related goals or concerns and clinician-reported health metrics/interventions and (ii) illustrating relationships between health status and clinical events. The IBD Qorus dashboard was available through a Health Insurance Portability and Accountability Act– compliant website (Figure 1), which could be used together during a clinic visit or independently by the patient or clinician outside the visit. Use by patients between visits was not universally encouraged as there was no workflow to provide timely monitoring of patient data outside of a visit. Setting and implementation Twenty-four IBD programmes tested the PVS and dashboard as part of participation in IBD Qorus. Care teams included at least one gastroenterologist and a clinical site coordinator or nurse. Support for improving care delivery and implementing the PVS and dash- board included monthly collaborative learning calls and check-ins from a coordinating centre and semi-annual collaborative learn- ing sessions. Support targeted regulatory requirements (Institutional Review Board (IRB) approvals and master site agreements for data use and protections), technical issues and use of quality improvement methodologies to support small-scale testing in the cont

tutional Review Board (IRB) approvals and master site agreements for data use and protections), technical issues and use of quality improvement methodologies to support small-scale testing in the context of each site’s workflow. For purposes of evaluation, a site clinician was con- sidered a participant after enrolling five or more patients into IBD Qorus. Adult IBD patients were invited by their care team to partici- pate in IBD Qorus. They completed an electronic informed consent process prior to participation. Patients were prompted via e-mail to complete a PVS approximately one week prior to their scheduled clinic visit and could enter data directly into the dashboard website. Clinicians manually entered a limited set of data via the dashboard website. Programme evaluation A formative evaluation was conducted to evaluate feasibility and util- ity of the dashboard, following methods used in a similar dashboard research project [9]. Anonymous Patient Surveys On a weekly basis, patients who completed an electronic PVS received an e-mail invitation from the Crohn’s & Colitis Foundation to complete an anonymous, online post-visit survey addressing use and value of the dashboard during and outside of clinic visits; like- lihood of recommending the dashboard to a peer (as measured by the Net Promoter Score [18]); characteristics of the care experience (including shared decision-making, as measured by CollaboRATE [19], and extent to which goals were addressed); and demographic and clinical characteristics.

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tics of the care experience (including shared decision-making, as measured by CollaboRATE [19], and extent to which goals were addressed); and demographic and clinical characteristics.

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ii42 Figure 1 Partial view of IBD Qorus dashboard, displaying patient-reported concerns, symptoms, disease activity and clinical events. Trend lines highlight stool frequency and abdominal pain, while reports of well-being and rectal bleeding are hidden. This dashboard view was accessible via both the patient and clinician portals. The clinician portal included additional tabs, such as regulatory information and population health query tools. Semi-structured Interviews and Site Visits Clinicians and coordinators from six sites (three with the highest patient enrolment and PVS completion and three with minimal patient participation) were recruited to participate in semi-structured interviews. Site visits to the three sites with the highest patient partic- ipation were conducted, including clinic tours, shadowing patients and clinicians, and observing team meetings. Semi-structured interviews were completed with nine clinicians (median length: 45 minutes; range: 11–58 minutes). Patients were recruited by clinicians or coordinators to participate in semi-structured inter- views. Semi-structured interviews were completed with seven adults with IBD (median: 29 minutes; range: 14–32 minutes). Each inter- view addressed all core questions from the interview guide, including partnering with patients/clinicians, experience and expectations for

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re questions from the interview guide, including partnering with patients/clinicians, experience and expectations for

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• ii43 use of the dashboard, and advice for others. Care team interviews also addressed strategies for fitting the PVS and dashboard into workflows and supports and barriers for use. Other Data The Crohn’s & Colitis Foundation and coordinating centre tabulated enrolment into IBD Qorus and PVS completion by clinician on a weekly basis. Analysis We used descriptive statistics (Chi-square and independent-samples t-tests) to summarize quantitative data. We used a P-value threshold of <0.05 to identify significant differences and used two-sided signifi- cance tests. Quantitative analyses were conducted using SPSS version 24. Missing data were excluded on an analysis-by-analysis basis. We used thematic analysis to analyse qualitative data. Qualitative inter- view data were coded by a primary reviewer, with 10% coding by a secondary reviewer. All qualitative data from surveys were coded by two reviewers. Discrepancies were identified and reviewed between reviewers to reach consensus. Qualitative analyses were conducted using Atlas.ti (version 8.4.5). Results Usage of IBD Qorus PVS Participating programmes were located in the Midwest (n = 5), Mid- Atlantic (n = 4), Northeast (n = 6), Southern (n = 2) and Western (n = 7) USA. Sixteen were housed in academic medical centres and eight in community-based practices. A median of two (range 1–10) clinicians per site enrolled five or more patients into IBD Qorus (n = 59 clinicians). Nearly two-thirds (64%; n = 38) of clinicians enrolled ≥25 patients. Fifty-nine per cent (n = 29) of clinicians received ≥25 electronic PVS; and 3834 PVS were received between 25 March 2019 and 26 April 2020 (multiple submissions over time per patient were possible). Evaluation participants Post-visit evaluation surveys were completed by patient

34 PVS were received between 25 March 2019 and 26 April 2020 (multiple submissions over time per patient were possible). Evaluation participants Post-visit evaluation surveys were completed by patients after 26% of visits with a completed PVS (n = 993). The study sample was limited to patients who reported being enrolled in IBD Qorus for one or more months (n = 537, 54%). Most participants were female (65%) and had graduated from college (70%). Two-thirds were diagnosed with Crohn’s disease (63%); one-third (34%) with ulcerative colitis and the remainder with unclassified IBD or other related diagnoses (3%). Most had been diagnosed for 10 or more years (57%). The average age was 46.6, standard deviation (SD) 15.4 years (Table 1). Compared to those enrolled for less than 1 month, those enrolled in IBD Qorus for more than 1 month were older (46.6, SD 15.4 vs. 44.3, SD 16.1, t(867) = 2.101, P = 0.04), more likely to be diagnosed with Crohn’s disease (63% vs. 56%; χ2(2) = 7.178, P = 0.03) and diagnosed for a longer period of time (χ2(3) = 22.877, P < 0.001). There were no differences in gender or education. Experience Two-thirds (65%, n = 344) of patients used the dashboard during a clinic visit and 33% (n = 176) used it outside a visit. Patients who used the dashboard during a clinic visit were older than those who did not use the dashboard during the clinic visit and less Table 1 Characteristics of patients completing a post-visit survey Study sample (n = 537)a Used dashboard during clinic visit (n = 344)a Used dashboard outside of clinic visit (n = 176)a Age in years (average, standard deviation) 46.6, SD 15.4 48.8, SD 14.5b 44.1, SD 14.2d Gender: female, n (%) 346 (64.8) 217 (63.1) 111 (63.4) Education High school equivalent or less 40 (7.5) 34 (9.9)c 20 (11.4) Some college 118 (22.1) 79 (23.0) 39 (22.2) College graduate 226 (42.3) 138 (40.1) 73 (41.5) Master’s/ doctoral level 150 (28.1) 93 (27.0) 44 (25.0) Confidence using Internet to access information rel

me college 118 (22.1) 79 (23.0) 39 (22.2) College graduate 226 (42.3) 138 (40.1) 73 (41.5) Master’s/ doctoral level 150 (28.1) 93 (27.0) 44 (25.0) Confidence using Internet to access information related to your health Not at all confident 8 (1.5) 6 (1.8) 1 (0.6) Somewhat confident 124 (23.2) 83 (24.3) 40 (22.9) Very confident 402 (75.3) 253 (74.0) 134 (76.6) IBD categorization Ulcerative colitis 181 (33.8) 112 (32.7) 64 (36.4) Crohn’s disease 339 (63.4) 220 (64.1) 110 (62.5) Other 15 (2.8) 11 (3.2) 2 (1.1) Length of time since diagnosed Less than 6 months ago 7 (1.3) 4 (1.2) 5 (2.8) 6 months to 2 years 39 (7.3) 22 (6.4) 15 (8.5) 2–10 years 183 (34.1) 116 (33.7) 65 (36.9) 10+ years 536 (57.3) 202 (58.7) 91 (51.7) aNumbers do not add up to the total number of surveys because of missing data. bt(516) = 4.972, P < 0.001. Patients not using the dashboard during a clinic visit had a mean age of 41.9 years (SD = 15.9). cχ2(3) = 9.161, P = 0.03. Education level of patients not using the dashboard during the clinic visit included high school diploma or less (n = 6; 3.2%), some college (n = 37, 20.0%), college graduate (n = 87, 47.0%) and mas- ter’s/doctoral level (n = 55, 29.7%). dt(517) = −2.441, P = 0.02. Patients not using the dashboard at home had a mean age of 47.6 years (SD = 15.7). likely to have graduated from college. Patients who used the dash- board at home were younger than those who did not use the dashboard at home. There were no other demographic differences (Table 1). Most patients indicated that the dashboard supported discussions with their clinician (82%; n = 283); helped talk about what matters most (76%, n = 258) and helped make healthcare decisions (71%, n = 239). People with high school or lower levels of education were most likely to feel that the dashboard helped them talk about what matters most (85%, n = 29), while those with a master’s degree or higher education were least likely to agree with this statement (64%, n = 59) (χ2(3) = 9.

the dashboard helped them talk about what matters most (85%, n = 29), while those with a master’s degree or higher education were least likely to agree with this statement (64%, n = 59) (χ2(3) = 9.945, P = 0.02). There were no other significant

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ii44 Table 2 Impact of the dashboard on shared decision-making, addressing goals and likelihood to recommend the IBD Qorus dashboard Study sample* Used dashboard during clinic visit* Used dashboard outside of clinic visit* n = 537 PVS + dashboard (n = 344) PVS only (n = 188) PVS + dashboard (n = 176) PVS only (n = 357) CollaboRATE top box score 329 (76.2) 225 (82.1) 100 (64.9) χ2(1) = 15.927, P < 0.001 109 (75.7) 218 (76.8) NS Extent to which goals are addressed Fully addressed 317 (80.1) 260 (83.1) 55 (68.8) χ2(3) = 10.872, P = 0.01 95 (80.5) 221 (79.8) NS Partially addressed 37 (9.3) 27 (8.6) 9 (11.3) 14 (11.9) 23 (8.3) Not addressed 6 (1.5) 3 (1.0) 3 (3.8) 1 (0.8) 1.8% (5) I did not identify a goal 36 (9.1) 23 (7.3) 13 (16.3) 8 (6.8) 28 (10.1) Likelihood to recommend dashboard Promoter (Score 9–10) 191 (36.9) 158 (47.0) 30 (16.8) χ2(2) = 64.223, P < 0.001 86 (49.4) 105 (30.7) χ2(2) = 26.463, P < 0.001 Passive (Score 7–8) 152 (29.3) 101 (30.1) 51 (28.5) 54 (31.0) 98 (28.7) Detractor (Score 1–6) 175 (33.8) 77 (22.9) 98 (54.7) 34 (19.5) 139 (40.6) Numbers do not add up to the total number of surveys because of missing data. differences detected by gender, age, diagnosis, education, confidence in accessing health information, or time since diagnosis. Patients who used the dashboard with their clinician during the clinic visit reported higher levels of shared decision-making, as mea- sured by CollaboRATE, than those who did not use the dashboard (Table 2). CollaboRATE scores were not significantly associated with gender, education or diagnostic criteria, but did differ across clinics. The relationship between use of the dashboard and higher levels of shared decision-making remained significant afte

ciated with gender, education or diagnostic criteria, but did differ across clinics. The relationship between use of the dashboard and higher levels of shared decision-making remained significant after adjusting for receiving care at a clinic with the highest CollaboRATE scores (80% or higher) (odds ratio (OR): 2.053; confidence interval (CI): 1.283–3.283). Those that used the dashboard during the clinic visit were more likely to report their goals were fully addressed, compared to those that only completed a PVS (Table 2). Use of the dashboard at home was not associated with higher levels of shared decision-making or greater likelihood of goals being addressed. Among patients who used the dashboard outside a clinic visit, most used it only before a visit (70%; n = 123), while 11% (n = 20) reported using it quarterly, 15% (n = 26) monthly and 4% (n = 7) daily or weekly. In addition to using IBD Qorus to complete a PVS or report symptoms, 24% (n = 42) used it to view their health information and 14% (n = 24) used it to update medications. Compared to those who only completed a PVS, patients who used the dashboard during the clinic visit or at home were significantly more likely to promote the dashboard to others (Table 2). Promoters were significantly older than those who were passive or detrac- tors (48.83, SD 13.62 vs. 45.28, SD 16.06; t(451.262) = 2.652, P = 0.01). There were no significant differences by gender, educa- tion, confidence in accessing health information, diagnosis or length of time since diagnosis. Thematic analysis Qualitative feedback revealed two themes (Table 3). Theme 1: The PVS and dashboard support visit planning and coproduction Patients indicated that the most useful aspects included being able to share their most important goal or concern and current health status via the PVS. This allowed them to help set the agenda for the clinic visit and document important goals or concerns to ensure they would not be forgotten during the visit. Clin

d current health status via the PVS. This allowed them to help set the agenda for the clinic visit and document important goals or concerns to ensure they would not be forgotten during the visit. Clinicians felt the PVS helped them know the patient’s primary concern and health status prior to the visit, improved their ability to prepare for the visit and helped shape which topics to focus on during the visit. Patients and clinicians suggested the dashboard helped improve quality of the clinic visit by allowing patients and clinicians to have access to the same information and see changes in health over time. Clinicians felt the dashboard improved quality of care through access to prospective, patient-reported data. The availabil- ity of data (e.g. PVS) was more important than visualization through the dashboard. Both patients and clinicians suggested the shared information provided through the PVS and dashboard allowed the clinic visit to be more efficient. The availability of patient- reported concerns and health status in advance of the visit freed time that would have been spent asking questions and review- ing symptoms, allowing for deeper conversations about goals and concerns. Theme 2: Lack of integration with the EHR and clinical workflows impedes implementation The lack of integration with existing EHRs and workflows limited implementation and uptake. Separation of the PVS and dash- board from the EHR required manually flagging of participants and distribution of PVS requests and duplicate data entry between the dashboard and EHR. The added burden limited uptake and use at many centres. A direct connection between the EHR scheduling functionality and PVS and dashboard, or incorporating the PVS

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dashboard and EHR. The added burden limited uptake and use at many centres. A direct connection between the EHR scheduling functionality and PVS and dashboard, or incorporating the PVS

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• ii45 Table 3 Themes derived from patient and clinician interviews or patient post-visit survey responses Theme User role Exemplar quotations Theme 1: The PVS and dashboard support visit planning and coproduction Prepare for clinic visit in advance Patient ‘It kind of frees up time in the visit in the fact that we’ve already communicated to a degree about what I’m experiencing and what my needs are. …. It does free up the time to maybe get more specific about those concerns or for him to spend the time explaining.’—Patient 6. ‘Helps to have thoughts and questions organized and focused in the forefront of my mind in preparing for visit.’—Survey respondent Clinician ‘I’ve always been frustrated that too much of the clinic visit is about extracting informa- tion from the patient, where that doesn’t help them. They know that part. What they want is to hear what we think and to make a plan with them together and to learn a little bit more about what next steps are. So, to me, this brings us a little bit closer to the next step.’—Clinician 9 Support for setting the visit agenda and discussions Patient ‘[What was cool was] being able to not just talk to him about what was going on, but also being able to go through and just write it all down and have it there before I even walk in the door.’—Patient #2 ‘Focusing in on my goals and my part in achieving them.’—Survey respondent ‘IBD Qorus allows me to sort through all of my questions and concerns before my visit so I don’t feel rushed during my appointment. It is like we are able to go through the appointment with my own customized checklist.’—Survey respondent Clinician ‘Knowing [the patient’s goal or concern] ahead of time just makes you a better doctor. And makes you re

o through the appointment with my own customized checklist.’—Survey respondent Clinician ‘Knowing [the patient’s goal or concern] ahead of time just makes you a better doctor. And makes you really address what your patient wants to come up, because I think a lot of that, people are afraid to ask you and they just kind of want to slip it in at the very end and I think IBD Qorus really brings that to the forefront.’—Clinician 8 Visualization Patient ‘Helpful in tracking progress being made with new drug therapy.’—Survey respondent ‘It was very interesting to see how my interpretation of how well I was feeling changed after the introduction of a new medication. It was very easy to see on the graph my health care provider showed me on the dashboard.’—Survey respondent Clinician ‘I find it most helpful when people have had multiple pre-visit surveys that have been filled out, because then you get that longitudinal view and that longitudinal graph that I think is really empowering in ways that we don’t realize. For example, this past week with [another clinician], we were looking at a dashboard together and then looking at it with a patient. He’s like, “Yes, that’s when I started this medication” and you see all the things drop. And it dawns on him that actually this [new medication] did make it better which is kind of nice.’—Clinician 8 Theme 2: Lack of integration with the EHR and clinical workflows impedes implementation Integration and automation Clinician ‘The more and more integration, the better. For instance, right now, having [our site coordi- nator] go in manually … check the schedule, who is in IBD Qorus. That part of it should at some point be automated.’—Clinician 1 ‘We need [the system] to send out the reminder to do the PVS. We have maximized the resources we can give to reminding, checking, and reminding again to do the PVS. With- out this help we will not be able to expand beyond [the current number of par

o do the PVS. We have maximized the resources we can give to reminding, checking, and reminding again to do the PVS. With- out this help we will not be able to expand beyond [the current number of participating] doctors.’—Clinician 6 Duplicate effort Clinician ‘The hugest thing would be if it feeds into Epic so that I have to do less documentation, like double documentation, or double looking at two screens.’—Clinician 3 Workflow changes Clinician ‘When it’s fully operational it can be highly supportive. I think the way we’re using it, because it’s barely sporadic, it’s hard to get a flow. It’s hard to readjust your system, your process of interfacing with the patients when you’re using it sometimes and not other times. Most of us are creatures of habit. So once we set it up as a new normal, it will be different. Right now it’s like we have to exert additional effort and brain power every time we use it, which is, in and of itself, a barrier.’—Clinician 2 into the EHR, was desired. Effective use of the dashboard required creating new habits for both patients and clinicians, and each change in workflow required time to learn. Discussion Statement of principal findings People in different roles (patients and professionals) describe disease and illness differently. This effort was aimed at facilitating the interactions and interdependent work of service coproduction by enabling a shared language [20]. In this project, patient-reported goals or concerns, symptoms and functioning were collected via a PVS and responses were combined with clinician-reported data in a dashboard. The PVS and dashboard supported coproduction and shared decision-making and were well-received by patients. They were seen as facilitating a shared understanding of goals, con- cerns, symptoms and well-being. Patients who used the dashboard during the clinic visit were twice as likely to report the highest level of shared decision-making and felt the PVS and dashboard h

con- cerns, symptoms and well-being. Patients who used the dashboard during the clinic visit were twice as likely to report the highest level of shared decision-making and felt the PVS and dashboard helped them prepare for the visit and supported coproduction. Lack of inte- gration with the EHR limited use of the PVS and dashboard. This

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ii46 project identifies potential benefits of using a PVS and dashboard to support coproduction at the point-of-care and limitations that must be overcome to support wide-scale adoption of such tools. Strengths and limitations This study had a number of strengths and limitations. First, this study gathered feedback from a large and diverse sample of adults with IBD who received care at IBD programmes in the USA, includ- ing community-based practices and academic medical centres in rural and urban areas. Despite a low survey response rate (26%), we report data from 537 surveys. This sample size allowed for identification of important differences between groups. Nonetheless, survey respon- dents may not be representative of the larger population of IBD Qorus participants. For example, our sample included a greater pro- portion of females (65% vs. 54%) and people with Crohn’s disease (63% vs. 58%), compared to a larger sample of IBD Qorus partici- pants completing a paper PVS [17]. Second, there may be differences in technical or health literacy skills and perceptions of people com- pleting the electronic PVS. A higher proportion of our sample had attended some college (92.5%), compared to the national popula- tion (59.5%) [21]. Notably, participants with lower education levels were more likely to use the dashboard with their clinician and find it helpful in talking about what matters most. Finally, survey data were coupled with a small but rich set of patient and clinician interviews from 6 of 24 IBD programmes. Patient and clinician experiences may differ based on financial and personnel resources available to suppo

ed with a small but rich set of patient and clinician interviews from 6 of 24 IBD programmes. Patient and clinician experiences may differ based on financial and personnel resources available to support implementation at each programme. Interpretation within the context of the wider literature Patient perceptions of the IBD Qorus PVS and dashboard are sim- ilar to those identified in a recent pilot test of CF Health Check, a cystic fibrosis dashboard [9]. In both populations, patients felt PVS and dashboards supported discussions with clinicians, helped talk about what matters most and helped make healthcare decisions. Sharing concerns and supporting visit planning was a benefit in both studies [9], demonstrating that digital tools can help patients and clinicians prepare to work together to coproduce healthcare services [3, 4]. Using a health questionnaire to share concerns and goals can identify areas that matter most to patients [22] and may sup- port shared decision-making in patients with IBD, potentially leading to increased patient satisfaction and treatment adherence [23, 24]. Of note, the shared task of reviewing the dashboard during the clinic visit had benefits beyond PVS completion or review or use at home—suggesting the importance of explicitly calling attention to patient–clinician partnerships and shared decision-making [1, 2]. The IBD Qorus PVS and dashboard were developed as a mecha- nism to support patient care, while feeding forward patient-reported and clinical data into a registry that supports quality improvement and research. While other LHSs have developed EHR-based data col- lection forms to support quality improvement reports, research and a patient-level dashboard [25–27], the lack of EHR integration limited implementation and added workload to clinical teams. Implications for policy, practice and research Health outcomes may be optimized when patients and clinicians have and can share information at the point of care, over time and

load to clinical teams. Implications for policy, practice and research Health outcomes may be optimized when patients and clinicians have and can share information at the point of care, over time and in a system capable of making and sustaining improvements [10, 28–30]. Patient- and clinician-reported data intended to support coproduc- tion should be integrated with the EHR or other HIT systems in use, which can automate sending PVS reminders, identify updated information and avoid duplicate documentation. In addition, pro- grammes should plan to dedicate staff time and support for training, implementation and improvement activities. The IBD Qorus dashboard continues to be evaluated in a number of clinical programmes. The continued collection of PVS using multiple methods supports both telehealth and in-person care. The IBD Qorus PVS will be used in a forthcoming treat- to-target initiative that will explicitly target patient and clinician treatment goals, building on qualitative findings regarding bene- fits of aligning care and tracking progress towards patient goals (Table 3). Future research should test systems that integrate and auto- mate PVS distribution and dashboard visualization within the EHR; explore the impact of a PVS and dashboard on improving health outcomes and explore micro, meso and macro structures that sup- port uptake of digital tools that enhance coproduction—including potential variation between academic medical centres and commu- nity practices. Research should also explore methods to increase participation by people with lower education levels, who perceive the greatest benefit of the dashboard, including partnering with this under-represented group to co-design digital tools or workflow processes that support uptake. Conclusion In summary, lessons learned are relevant to other communities con- sidering developing digital tools to support coproduction of health- care services. Patients value the opportunity to share their primary concer

lessons learned are relevant to other communities con- sidering developing digital tools to support coproduction of health- care services. Patients value the opportunity to share their primary concerns, symptoms and functioning in advance of the visit, and clin- icians appreciate being prepared to discuss issues that matter most to patients and tracking patient-reported outcomes alongside clinical outcomes. However, HIT systems that support such sharing must be designed to support uptake and efficient use and must integrate with existing workflows. Acknowledgements We would like to thank the patients, clinicians and clinical site coordinators of the IBD Qorus Learning Health System for participating in this evaluation. Paul Batalden, Tina Foster and Brant Oliver provided review and feedback of the manuscript. Emily Morgan and Amanda Hoggard participated in the collection and coding of data. IBD Qorus is made possible in part by the sup- port of AbbVie, AMAG Pharmaceuticals, Eli Lilly, Helmsley Charitable Trust, Janssen Biotech, Inc., Luitpold Pharmaceuticals, Inc., Nephroceuticals LLC, Nestle Health Sciences, Pfizer, Inc., Takeda Pharmaceuticals U.S.A., Inc. and UCB. Funding This work was supported by the Crohn’s & Colitis Foundation (grant number 3201638, between January 2018 and December 2020). Data availability The data underlying this article will be shared on reasonable request to the corresponding author. Contributorship Aricca Van Citters: study design, evaluation, analysis, interpretation and manuscript writing. Megan Holthoff: data collection, study design, manuscript writing and regulatory support. Alice Kennedy: data collection, evaluation, manuscript editing and regulatory support. Gil Melmed: study design, patient recruitment, interpretation and manuscript editing. Ridhima Oberai: data

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nedy: data collection, evaluation, manuscript editing and regulatory support. Gil Melmed: study design, patient recruitment, interpretation and manuscript editing. Ridhima Oberai: data

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• ii47 collection and manuscript editing. Corey Siegel: study design, patient recruit- ment, interpretation and manuscript editing. Alandra Weaver: study design and manuscript editing. Eugene Nelson: acquisition of funding, study design, interpretation and manuscript writing. Ethics and other permissions The study received ethical approval from the Dartmouth Center for the Protection of Human Subjects Institutional Review Board (IRB) (#00028839). References 1. Batalden P. Getting more health from healthcare: quality improvement must acknowledge patient coproduction-an essay by Paul Batalden. BMJ 2018;362:k3617. 2. Elwyn G, Nelson E, Hager A et al. Coproduction: when users define quality. BMJ Qual Saf 2019;29:711–16. 3. Batalden M, Batalden P, Margolis P et al. Coproduction of healthcare service. BMJ Qual Saf 2016;25:509–17. 4. Wagner EH. Chronic disease management: what will it take to improve care for chronic illness? Eff Clin Pract 1998;1:2–4. 5. Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood) 2013;32:207–14. 6. Greene J, Hibbard JH, Sacks R et al. When patient activation levels change, health outcomes and costs change, too. Health Aff (Millwood) 2015;34:431–7. 7. Holland-Hart DM, Addis SM, Edwards A et al. Coproduction and health: public and clinicians’ perceptions of the barriers and facilitators. Health Expect 2019;22:93–101. 8. Baim-Lance A, Tietz D, Lever H et al. Everyday and unavoidable coproduc- tion: exploring patient participation in the delivery of healthcare services. Sociol Health Illn 2019;41:128–42. 9. Van Citters AD, Gifford AH, Brady C et al. Formative evaluation of a dashboard to support coproduction of healthcare servic

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