Patient Experience Data Research Articles

A Mixed Methods Evaluation of a Quality Improvement Model to Optimize Perinatal and Primary Care in the Community Health Setting.

Many maternal deaths occur beyond the acute birth encounter. There are opportunities for improving maternal health outcomes through facilitated quality improvement efforts in community settings, particularly in the postpartum period. We used a mixed methods approach to evaluate a collaborative quality improvement (QI) model in 6 Chicago Federally Qualified Health Centers (FQHCs) that implemented workflows optimizing care continuity in the extended postpartum period for high-risk prenatal patients. The Quality Improvement Learning Collaborative focused on the implementation of a registry of high-risk prenatal patients to link them to primary care and was implemented in 2021; study data were collected in 2021-2022. We conducted a quantitative evaluation of FQHC-reported aggregate structure, process, and outcomes data at baseline (2020) and monthly (2021). Qualitative analysis of semistructured interviews of participating FQHC staff focused on the experience of participating in the collaborative. At baseline, none of the 6 participating FQHCs had integrated workflows connecting high-risk prenatal patients to primary care; by the end of implementation of the QI intervention, such workflows had been implemented at 19 sites across all 6 FQHCs, and 54 staff were trained in using these workflows. The share of high-risk patients transitioned to primary care within 6 months of delivery significantly increased from 25% at baseline to 72% by the end of implementation. Qualitative analysis of interviews with 11 key informants revealed buy-in, intervention flexibility, and collaboration as facilitators of successful engagement, and staffing and data infrastructure as participation barriers. Our findings show that a flexible and collaborative QI approach in the FQHC setting can help optimize care delivery. Future evaluations should incorporate the patient experience and patient-level data for comprehensive analysis.

Thematic analysis to explore patients’ experiences with long COVID-19: a conceptual model of symptoms and impacts on daily lives

ObjectivesThere is limited qualitative research on patients’ experiences with long COVID-19, and how specific symptoms impact their daily lives. The study aimed to understand patients’ lived experiences of long COVID-19...

Factors Associated With the Nursing Care Experience of Patients Admitted to Riyadh Region Hospitals.

In the contemporary healthcare landscape, the paradigm of patient experience and patient-centered care has emerged as a crucial point for healthcare reform, emphasizing the patient's active role in shaping healthcare systems. This study aimed to investigate the patient experience level of nursing care and examine associated factors among hospitalized patients in Riyadh, Saudi Arabia. Cross-sectional secondary analysis of patient experience data included more than 8,000 patients discharged from Ministry of Health hospitals in Riyadh during 2022G. The national survey examined patient perceptions of multiple aspects of nursing care. Although most patients gave high overall scores, lower scores were observed for nurse introductions and prompt responses to call buttons. There are opportunities to improve communication and response through interventions targeting nurse staffing, training, and incentives. A checklist called Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) was used to report the study. 71.2% Of patients rated their nursing care experience as "very good." No differences were seen between genders. However, Saudi patients reported higher satisfaction than non-Saudis (p = .001). The top-scored nursing aspects were friendliness/courtesy (70.2% "very good") and nurses' skill level (65.8% "very good"). Lower ratings occurred for nurses who introduced themselves (54.0% "very good") and for prompt response to call buttons (58.5% "very good"). Targeted improvements in communication and responsiveness could help address these gaps in patient experience scores between nursing care domains. Most of the patients indicated overall positive nursing care experiences, which include opportunities for improvement in nurse introductions and responsiveness to patient needs. Boosting communication through nurses consistently introducing themselves and managing heavy workloads to allow faster call button response times could enhance patients' perceptions of their nursing care quality.

Revealing patient-reported experiences in healthcare from social media using thedesign-acquire-process-model-analyse-visualise framework.

Understanding patient experience in healthcare is increasingly important and desired by medical professionals in a patient-centred care approach. Healthcare discourse on social media presents an opportunity to gain a unique perspective on patient-reported experiences, complementing traditional survey data. These social media reports often appear as first-hand accounts of patients' journeys through the healthcare system, whose details extend beyond the confines of structured surveys and at a far larger scale than focus groups. However, in contrast with the vast presence of patient-experience data on social media and the potential benefits the data offers, it attracts comparatively little research attention due to the technical proficiency required for text analysis. In this article, we introduce the design-acquire-process-model-analyse-visualise framework to provide an overview of techniques and an approach to capture patient-reported experiences from social media data. We apply this framework in a case study on prostate cancer data from /r/ProstateCancer, demonstrate the framework's value in capturing specific aspects of patient concern (such as sexual dysfunction), provide an overview of the discourse, and show narrative and emotional progression through these stories. We anticipate this framework to apply to a wide variety of areas in healthcare, including capturing and differentiating experiences across minority groups, geographic boundaries, and types of illnesses.

Putting Patient Experience Data into Action! A Workshop to Explore the Collection and Use of Patient Experience Data in Practice

Health systems globally are in pursuit of the quintuple aim – better population health, improved patient and caregiver experiences, improved clinician experiences, sustainable per capita costs1 and greater health equity. Patients and their care partners (family and friends who provide care) have unique insights on the quality of healthcare delivery, yet, few organizations are poised to meaningfully integrate these voices into care delivery transformation efforts. Patient experience (PE) data comes in many forms including (and not limited to) structured and unstructured survey data, narratives of patient and family complaints or accolades, adverse event reporting, or qualitative interviews and focus groups. These data are often temporally lagging the patient’s interaction with the health system, rarely includes the voices of equity deserving groups (i.e, individuals who have been historically marginalized and underrepresented in research) and are seldom used for improving care.
 To meet the expectations of patients and care partners, we require a comprehensive, systematic, and sustainable approach to integrating patient and care partner voices into how we reform, design and deliver care.
 Through a scoping review and stakeholder engagements we have highlighted that methods for the collection and implementation of PE data should be multidimensional and have identified four components of a PE Tool-kit (PET) to move from knowledge to action: 1) engage the community meaningfully; 2) identify and curate multiple forms of PE data; 3) aggregate and synthesize PE data; and 4) integrate PE data into quality improvement efforts.
 We are conducting this workshop to further explore domains within our proposed Patient Experience Tool-Kit that resonates with an international audience and identify gaps and implementation considerations.
 The workshop will be grounded by a brief theory burst about the challenges the PET and its components aim to address followed by interactive sessions in small groups to address the following questions:
 1)How will the proposed components support the link between the collection and use of PE data into health system improvement efforts? What tool-kit components are missing?
 2)What are the barriers and facilitators to implementing the PE Tool-Kit?
 Note: we will direct participants to use a sociotechnical systems approach when identifying barriers and facilitators which consists of: people, environment (macro/micro), tools (i.e., technology), and tasks (i.e., process).
 3)What are the considerations/adaptations to consider that will support the Tool-Kit’s adoption across different sectors of the integrated care system?
 
 Introduction to Workshop/ Overview of Activities – 5 mins
 Presentation of Patient Experience Tool-Kit Components- 10 mins
 Small group discussions to address the three questions (each table to start with a different question)- 30 mins
 Large group activity to report back and synthesis small group discussion, including the l use Mentimeter to capture core insights). The facilitators will summarize key insights and highlight core themes captures in the discussion at the end of the activity – 20 minutes
 Wrap up to assess interest in developing a community of practice for continued learning and sharing- 5 mins
 

East Toronto Health Partners: Collaborating on Quality Improvement

Developing a shared quality agenda has led to a new focus on population health within our community in East Toronto, Ontario, Canada. Amidst pandemic recovery, community members often struggle to access care. Health care organizations are challenged to support patient flow and mental health needs, and to catch up on preventative care and chronic disease management that was delayed due to reduced in-person care. One might think that these pressures would sideline quality improvement (QI) work, however we’ve seen new energy generated by QI capacity-building and application of rapid learning cycles to address our shared challenges. 
 Ontario Health Team context
 An Ontario Health Team is “a group of collaborative partners (organizations and individuals who offer health services, social services, and other health-relevant activities) brought together under a collaborative governance framework… to work with, and be accountable for, the health and wellbeing of a well-defined Attributed Population.” This context generates motivation for organizations and stakeholders to work closely on quality initiatives. Quality improvement activities form part of a larger rapid-learning health system strategy that includes program evaluation, evidence-based best practices in frontline care, and business intelligence efforts.
 Approaches within our QI Collaboration
 -Collecting and sharing patient experience measures as part of Best Practice Guideline implementation for Person & Family-Centred Care;
 -Strengthening involvement of community members; co-creating our 2022 collaborative Quality Improvement Plan with diverse partners;
 -Accessing and reflecting on baseline data for our defined population, and building capacity for local analytics. Together with other Ontario Health Teams, we have outlined requirements for data and tools to support population health management;
 -Focusing on priority neighbourhoods to improve health equity; and building QI capacity with teams of Community Health Ambassadors within those neighbourhoods.
 Key Learnings
 Patient Experience: We grounded our work in person- and family-centred care; respecting the voices of patients and caregivers in reporting their level of involvement in care plans and treatment. Collaboration among partners uncovered examples of best practice in patient experience data collection and moved us toward data collection as an integrated system of care (beyond surveys conducted within individual organizations). 
 Patient Flow: Our collaboration led us to focus “upstream,” and to strengthen our ability to identify unmet needs for clients in community settings. A strengths-based assessment across collaborating organizations helped to increase awareness of diverse assets within our community and examples of leadership in Seniors-Friendly Care. We are launching transdisciplinary teams dedicated to responsive support for transitions in care. 
 Preventative Care: An equity approach was key. In addition to primary care practice-based improvement initiatives (e.g. cancer screening) we prioritized efforts to reach vulnerable groups, such as individuals without a family doctor, and those with barriers to navigating health services in English. Rapid-cycle improvement and evaluation plans (co-designed with community members) are helping to ensure that service offerings are addressing the needs of the community.
 RESULT: The East Toronto Health Partners’ collaborative Quality Improvement work has helped our Ontario Health Team to align and integrate work across multiple organizations – building our capabilities for proactive population health management.

An Orthopaedic perspective on developing a Patient Experience Survey tool

Introduction: Our program’s aim is to integrate patients' values and perceptions of quality care into clinical decision-making and integrated orthopaedic care models that are reflective of the community/population that is served. Our institution currently has limited patient experience data or standardized tools that would allow us to comprehensively understand patient perspective across our orthopaedic populations. To that end, we designed a survey to understand patients’ experiences and any gaps that would require actionable change in real-time.
 Objectives and Methodology: The goal was to develop a survey tool that can meaningfully capture patient needs and preferences that impact their experiences and help identify any gaps or areas of opportunity to address. An environmental scan was completed which identified two validated patient experience surveys used to inform our survey development: CIHI’s CPES-IC (Canadian Institue for Health Information Canadian Patient Experience Survey - Inpatient Care) and OHA (Ontario Hospital Association) Outpatient Experience Survey. The survey was tested across a multidisciplinary team via feedback surveys and focus groups: 6 Patient Partners, 1 Clinical Manager, 3 Advanced Practice Practitioners, 3 Orthopaedic Surgeons, 4 Researchers, and 2 Administrators. Findings were collated and used to iterate the survey content until consensus was reached on a final patient experience survey. 
 Highlights or Results or Key Findings: The focus of the survey is on understanding the patient’s Outpatient experience with their care team in orthopaedic clinics from referral to assessment. The survey was designed to cover multiple orthopaedic populations including patients with Hip and Knee, Foot and Ankle, Shoulder, Elbow and Spine issues. It focuses on two key components of the patient journey: 1) Pre-appointment and 2) Post-appointment. The pre-appointment pathway was deemed to be important as patient experience is often captured once care is delivered and it was important to understand how patients perceive their pre-appointment experience defined as the time from referral through day of appointment up to the time patients are seen (arrival at hospital, checking in to clinic). Specifically, the pre-appointment survey has up to 42 questions that aim to capture the patients’ perspectives on the clinic’s communication practices, wait time to be contacted, wait time for an appointment, how prepared patients felt for their appointment, how they felt about access to the clinic, their experiences with care transitions, their thoughts on transportation and any education that they received, and their overall experience. The post-appointment survey has up to 41 questions focused on understanding the patients’ perspectives on care transitions, the clinic space; wait time to see the practitioner, expectations, engagement in decision making, communication practices, education they received, and any other factors impacting their experience (e.g. confidentiality, empathy, trust, dignity). 
 Conclusion and Next Steps: The survey, reviewed with our patient partners and multidisciplinary team, was found to be comprehensive and have good face validity. The survey will be implemented and the data will be analyzed to understand themes around areas of success and areas of improvement to advance our integrated models of care in order to provide high quality patient-centered care.

Current Practices and Challenges When Submitting Patient Experience Data for Regulatory Decisions by the US Food and Drug Administration: An Industry Survey.

To understand industry practices and challenges when submitting patient experience data (PED) for regulatory decisions by the US Food and Drug Administration (FDA). A two-part online survey related to collection, submission, and use of PED by FDA in regulatory decision-making (part 1) and a best-worst exercise for prioritizing potential PED initiatives (part 2) was completed by industry and contract research organization (CRO) members with ≥ 2 years of recent experience with patient-reported outcome (PRO), natural history study (NHS), or patient preference (PP) data; and direct experience with FDA filings including PED. A total of 50 eligible respondents (84% industry) completed part 1 of the survey, among which 46 completed part 2. Respondents mostly had PRO (86%) and PP (50%) experience. All indicated that FDA meetings should have a standing agenda item to discuss PED. Most (78%) reported meetings should occur before pivotal trials. A common challenge was justifying inclusion without knowing if and how data will be used. Most agreed that FDA and industry should co-develop the PED table in the FDA clinical review (74%), and the table should report reason(s) for not using PED (96%) in regulatory decision-making. Most important efforts to advance PED use in decision-making were a dedicated meeting pathway and expanded FDA guidance (51% each). FDA has policy targets expanding PED use, but challenges remain regarding pathways for PED submission and transparency in regulatory decision-making. Alignment on the use of existing meeting opportunities to discuss PED, co-development of the PED table, and expanded guidance are encouraged.

Patient-reported experience is associated with higher future revenue and lower costs of hospitals

BackgroundDespite the established positive association between patient experience and patient volume, the relationship between patient experience and the financial performance of hospitals has not been studied thoroughly.MethodsTo investigate this relationship, we used longitudinal data from 132 Swiss acute-care hospitals from 2016 to 2019 to examine the associations between patient experience and the proportion of elective patients, revenue, costs, and profits of hospitals. To account for a potential time lag effect, we utilized annual patient experience data and employed multilevel mixed-effects regression modeling to investigate its association with the aforementioned financial performance indicators for the following year.ResultsData for private and public hospitals were analyzed both separately and in combination, to account for the different proportions of elective patients in these types of hospitals. The resulting mixed models, revealed that for each year studied, the previous year’s patient experience was positively associated with the current year’s proportion of elective patients (β = 0.09, p = 0.004, all hospitals) and revenue (β = 1789.83, p = 0.037, private hospitals only), and negatively associated with costs (β = − 1191.13, p = 0.017, all hospitals); but not significantly associated with future profits (β = 629.12, p = 0.240, all hospitals).ConclusionsThis analysis showed that better patient experience is associated with a higher proportion of elective patients, greater revenue, and lower costs. Our findings may assist hospital managers and regulators in identifying strategies to increase revenue and reduce costs.

Do Quality and Safe Care Champions in community nursing teams positively impact on patients?

Quality Always' Clinical Assessment and Accreditation Scheme (CAAS), which consists of a process of assessments, reviews and accreditation in community healthcare services, was established in 2014 to drive improvements in the quality of patient care. The authors set out to understand whether the methodologies put in place to establish quality patient care were effective within the community nursing setting. To understand whether a quality and safe care champions network would support frontline community staff to embed evidence-based practice and affect the quality of care received by patients in the community setting. A study was undertaken on data from the CAAS, as well as patient safety and experience data, to identify whether there was any correlation between quality and safe care champions and the quality of patient care. The authors identified data and practical examples to demonstrate a correlation between the engagement of champions in a community nursing team and improvement in quality standards for patients, including the most effective methods of engaging the community nursing quality and safe care champions. The authors conducted a benefits realisation exercise using elements of the East London NHS Foundation Trust's framework. This provided useful information for the community trust as a proof of concept regarding supporting a network of Quality and safe care champions in the community setting and understanding their impact on safe patient care.

PP131 Health Technology Assessment Agencies’ Expectations Regarding Patient Experience Data in Europe

IntroductionHealth technology assessment (HTA) agencies are increasingly embracing patient experience data (PED) to support reimbursement decisions. This study aimed to describe the European Network for HTA (EUnetHTA) and HTA agencies expectations regarding PED to support reimbursement in France, Germany, Italy, Spain and the UK.MethodsPublished HTA guidance documents were reviewed to identify recommendations related to clinical outcomes assessment (COA) (including disease-specificity, validation, analyses, endpoints and interpretation) and other forms of PED (e.g., patient preference information) in HTA decision-making. Insights from guidance documents were supplemented with a review of literature and published HTA cases and interviews with key opinion leaders (KOLs) focused on current and future states.ResultsThe German and French guidance documents include PED recommendations focused on relevant COA and health-related quality of life data, without detailing preferred COA measures. However, key differences were noted between these two countries in the methodological approaches regarding responder definitions, acceptable missing data threshold and multiplicity analyses. These differences were reinforced by the case studies and the KOLs. UK’s sources also focused on COA, in general proposing specific use of the EQ-5D to derive utility values for modelling, but included limited details on other PED-related elements. The Italian and Spanish guidance documents do not detail COA or other PED expectations, but the Italian KOL described that COA is considered if submitted. The currently developed EUnetHTA21 guidelines include PED-related information that bear the signature of certain individual HTA bodies. Globally, there is limited interest in PED beyond COA across the agencies.ConclusionsThe level of expectations with regards to PED varies across EUnetHTA and several European HTA agencies. Interest in PED derived from non-COA sources is limited across the countries. Knowing each agency’s expectations with regards to PED is key when submitting HTA evidence dossiers and should be considered early in clinical trial design to integrate market access perspectives and optimize drug development. Global harmonization would help advancing PED measurement standards.

PP132 Health Technology Assessment Agencies’ Expectations Regarding Patient Experience Data in Australia, China, And Japan

IntroductionHealth technology assessment (HTA) agencies are increasingly embracing patient experience data (PED) to support reimbursement decisions. This study aimed to review HTA agencies’ expectations with regards to utilizing PED to support drug reimbursement in Australia, Japan, and China.MethodsPublished HTA guidance documents were reviewed in 2021 to identify any PED-specific information. If available, recommendations related to the type of PED (e.g., generic vs. disease-specific clinical outcomes assessment (COA)); COA validation, analyses, endpoints and interpretation; and the interest in PED beyond COA in HTA decision-making (e.g., patient preference information) were reviewed. Literature review and semi-structured interviews with key opinion leaders (KOLs) were conducted to further explore these themes and future trends with regards to PED.ResultsAustralia’s Pharmaceutical Benefits Advisory Committee guidance document includes a dedicated section on patient-reported outcomes (PRO), providing details on preferred PRO instruments; validation expectations; and recommended methods to explore score interpretation, assess and report PRO results and handle missing data. While PED derived from non-PRO sources are not discussed in the guidance, the KOL noted that they should not be ruled out. Japan’s Center for Outcomes Research and Economic Evaluation for Health guideline includes a section dedicated to PROs without details related to instrument validation, analyses and interpretation, however, is focused on the use of PRO to inform health economic assessments. In China, the HTA center of China National Health Commission drafted two disease-specific technical guidance documents recommending the inclusion of PROs in efficacy assessments and use of instruments relevant in the Chinese population; these points were echoed by the KOL interviewed.ConclusionsThere are recommendations on PED use included in country-specific guidance documents, however their level of detail varies greatly. Knowing each agency’s expectations with regards to PED is key when submitting HTA evidence dossiers and should be considered early in clinical trial design to integrate market access perspectives and optimize drug development.

HPR138 How Are Patient Experience Data Reported in Regulatory Evaluation of Medicinal Products? A Document Analysis of European Public Assessment Reports

HPR138 How Are Patient Experience Data Reported in Regulatory Evaluation of Medicinal Products? A Document Analysis of European Public Assessment Reports

HTA141 Exploring the Role of Patient Experience Data and Patient Involvement in Health Technology Assessment Decision Making

HTA141 Exploring the Role of Patient Experience Data and Patient Involvement in Health Technology Assessment Decision Making

HPR158 Challenges, Opportunities and Policy Ways Forward to Systematically Embed the Use of Patient Experience Data in Healthcare Decision-Making: Insights From Multi-Stakeholder Interviews

HPR158 Challenges, Opportunities and Policy Ways Forward to Systematically Embed the Use of Patient Experience Data in Healthcare Decision-Making: Insights From Multi-Stakeholder Interviews

Cross-Community Collaboration and Data Collection to Optimize Patient Care in Hemolytic Anemias

Background: Patient engagement is becoming increasingly important for all facets of healthcare, from drug development and approval, to ensuring equitable access and the delivery of care. It is imperative to bring the voice of those impacted by the actual disease into these processes: this is particularly true for rare diseases, such as hereditary hemolytic anemias (HHAs), where the disease burden is often high and coupled with a poor quality of life and complex treatment requirements. The Red Cell Revolution™ (RCR) advisory council arose organically as part of an Agios Pharmaceuticals-sponsored discovery process, during which a range of stakeholders including healthcare providers (HCPs), advocates, patients, and company leaders offered perspectives on how to optimize engagement with the disease communities. Insights uncovered as part of this process demonstrated that there are unifying health concerns and needs among those impacted by pyruvate kinase (PK) deficiency, sickle cell disease (SCD), and thalassemia, and that there is an opportunity to explore new patient-advocacy research, supported by the creation of a unique multi-stakeholder council. Objective: To apply a multi-stakeholder, rigorous patient-advocacy data collection approach to understand the unmet needs of patients, caregivers, and HCPs for three HHAs: PK deficiency, SCD, and thalassemia. Methods: The RCR (supported by Agios Pharmaceuticals) was established across three allied disease areas, with representation from patients (N=5), caregivers (N=1), advocates (N=3), clinicians (N=8), and Agios representatives (N=5) impacted by HHA. The patient advocacy research method commenced with a survey shared with all RCR members, which curated both qualitative and quantitative insights from the group. These insights subsequently underwent cluster analysis to determine the shared concerns experienced by those impacted by HHA. The data were also subjected to linguistic analysis whereby terminology used to describe the experiences of participants was ranked according to frequency of use to reveal the most prominent concerns. The results of these analyses were distilled into an agreed group vision by the RCR, and a specific research strategy was aligned on for the RCR to pursue. Results: RCR members provided detailed answers about unmet needs across three categories: 1) impact of disease; 2) local and regional community needs; and 3) international community needs. When applied, the analysis uncovered 12 common concerns expressed by all participants across the three disease areas. These are outlined in Table 1. These insights were distilled into four key topic areas: 1) emotional and physical fatigue, 2) timely care, 3) transition from pediatric to adult care, and 4) access disparities, which were then ranked according to four parameters, namely whether it was: 1) common across all three disease areas, 2) global in scope, 3) high potential for lasting impact, and 4) revolutionary (involving or causing a complete or dramatic change). This produced alignment on one key priority: emotional and physical fatigue. Conclusion: The commonality analysis deployed here demonstrates the ability of a multi-stakeholder council to determine priority areas for research to address unmet needs. The RCR will conduct an in-depth evidence audit of the existing research in this field to identify key knowledge gaps, enabling the design of a study that will answer outstanding research questions. This study will generate patient experience data with the potential to inform both the clinical setting and drug development. As a next step, the RCR is developing a patient advocacy research study to collect the necessary evidence to better understand fatigue and its impact on psychosocial quality of life measures, such as feelings of guilt.

Development and implementation of a patient reported experience measurement program to transform cancer care.

343 Background: Improving the patient experience is central to providing high-quality, value-based care. Patient reported experience measures (PREMs) are tools to evaluate and improve quality of care. Your Voice Matters (YVM) is a validated survey created by Cancer Care Ontario that captures patient experience in outpatient settings at Regional Cancer Centres across Ontario, Canada. While most hospitals actively collect patient experience data, few have moved to action feedback to improve outcomes. Princess Margaret Cancer Centre (PM) implemented a systematic approach to PREMs evaluation to advance operational excellence in an outpatient setting. Methods: PM distributes the YVM survey monthly to patients with outpatient visits via email using a Redcap survey platform (93% of patient emails are on file). In addition to the standardized YVM questions, the survey captures respondent comments in an open text field asking about one thing PM can improve and comments are thematically coded and trended monthly. Patients reporting a very poor experience with care (defined as an overall experience of 1/5) who wish to connect with PM are contacted to provide additional information. Key performance indicators (KPIs) were established and visualized in run charts in a Power BI dashboard. KPIs were disseminated to staff and leadership to identify opportunities for improvement. Results: Starting in 2022, approximately 10,600 surveys were disseminated monthly to patients and 1,100 surveys returned (10% response rate) with 10-15 patients contacted each month regarding their poor experience. Long wait times was the top concern across three main outpatient clinics; in the Gynecology clinics, in March 2022, only 45% (35/77) of respondents rated wait times as very good (5/5) and 32% (11/34) of comments were wait times complaints. A comprehensive root cause analysis found that the visit booking system, distribution of clinics across the weekdays, and supports in clinic were key contributors to long wait times. In response, Gynecology clinic resources were reorganized to launch a new Physician Assistant clinic on the underutilized Friday afternoon clinic timeslot, a new streamlined visit process was established, and the booking system was optimized. Within six months, there was a 39% improvement in wait times on weekdays, a 60% increase in the number of patients waiting less than 30 minutes, and a 37% increase in visit capacity on underutilized Fridays. The corresponding patient experience data over the same timeframe improved seen as an increase from 45% to 52% of patients who rated wait times to see the provider as 5/5. Conclusions: A programmatic approach to PREMs evaluation and response can drive improvement in practice. Facilitators include a data-driven methodologic approach to quality improvement, leadership engagement at all levels, and elevation of frontline staff as local experts and change agents.

Learning from experience: Integrating patient experience survey responses with other key metrics to understand and improve care quality and patient safety

Abstract Issue The Irish National Care Experience Programme (NCEP) collects rich qualitative and quantitative data on patient and service-user experiences of healthcare. These survey data are not routinely triangulated with other quality and safety datasets for patient safety surveillance. Description of the problem The Irish Health Service Executive has commenced development of a quality and patient safety surveillance system called Quality and Safety Signals (QS Signals). This programme seeks to optimise the use of existing data to reduce variability in quality and safety of services, identify risks and signals of concern, as well as learnings from signals of excellence. Patient experience data is a rich source of insight into quality and safety of care but currently, it is not routinely considered alongside other quality and safety measures. Results As a proof of concept, the Quality and Safety Signals programme is collaborating with the National Women and Infants Health Programme (NWIHP) to develop a composite profile of quality and safety for maternity and neonatal services. A Clinical Advisory Group (CAG) has been established with multi-disciplinary clinical representation from Ireland's six Maternity Networks. To reach agreement amongst the CAG on the indicators relevant to the measurement of quality and safety, a series of interviews, workshops and a Delphi Survey are being conducted. The co-design process seeks consensus on the themes and classification structure appropriate for a composite profile of quality and safety. Lessons The implementation of a patient safety surveillance system challenges the Irish health system to reflect on how available data can best be harnessed. Person-centredness is a core domain of healthcare quality. Capturing the person's experience of care through the NCEP surveys is vital to ensuring the development of a comprehensive profile and guiding quality improvements.

How do patient and care experience data inform policy and practice? Insights from the Irish National Care Experience Programme

Abstract Issue Patient experiences are central to the delivery of quality, person-centred care and an important predictor of outcomes. Prior to 2017, there was no unified, national approach to the collection of care experience data in Ireland. Description of the problem The National Care Experience Programme is a partnership between a regulator, policy makers and the Irish public health service, with a suite of surveys of inpatient, maternity, nursing home and end of life care. The surveys aim to learn from people's feedback on health and social care services to identify areas of good experience and areas requiring improvement. Results Findings have informed national policies, including a healthcare communication programme to support staff to develop communication skills with patients and families. Survey data provide a key input to the Irish health quality indicator framework and the Health Systems Performance Assessment Framework, which assess the overall performance of the Irish health system. National Maternity Experience Survey results informed the allocation of funding for post-natal supports and new lactation consultant posts, and supported the implementation of a specialist perinatal mental health services model of care, leading to increased diagnosis and vigilance of mental health issues ante- and postnatally. National Nursing Home Experience Survey findings supported legislative amendments, including provision for the delivery of in-person advocacy awareness campaigns and the strengthening of complaints processes within nursing homes. Lessons In order to maximise the use of survey findings and ensure the voices of people using health and social care services are acted on, routine surveying of care experiences is required to track the impact of policy and practice initiatives. The programme is currently expanding to include people's experiences of cancer care and mental health services, in addition to exploring options for continuous, local care experience surveys.

Co-creation of the Global Patient Experience Data Navigator: a multi-stakeholder initiative to ensure the patient voice is represented in health decision-making

BackgroundPutting patients’ needs and priorities at the forefront of healthcare initiatives and medical product development is critical to achieve outcomes that matter most to patients. This relies on the integration of early, meaningful patient engagement (PE) to learn what is important to patients, and collection of representative patient experience data (PXD). The increased number of PE/PXD efforts across global regulatory, health technology assessment, and healthcare systems is an important step forward to deliver improved health outcomes for patients. However, these initiatives are fragmented and lack integration, which is necessary to maximize efforts and reduce burden on patients. To overcome these challenges, the Global Patient Experience Data Navigator has been co-created by Patient Focused Medicines Development to provide practical resources that can facilitate and optimize PXD generation, collection, analysis, and dissemination for patient benefit and aims to be applicable across all therapeutic areas for all stakeholders.MethodsCo-creation of the Navigator took place through an iterative process of validation and formalization driven by a diverse, multi-stakeholder working group with individuals who have varying knowledge/experience in PE/PXD.ResultsA series of workshops took place to conduct a gap analysis, develop a taxonomy model, and integrate existing frameworks. The collective insights led to the development of the Navigator consisting of four specific tools in the form of downloadable templates, which can be used to: (1) prioritize outcomes that matter most to patients and their caregivers; (2) select appropriate measurement methods for these outcomes; (3) identify when and why PXD is used throughout the product development cycle for each stakeholder; (4) identify when and why PXD is used throughout the healthcare process for each stakeholder. A public consultation was carried out to collect user feedback before the Navigator was made publicly available in December 2022.ConclusionTo our knowledge, the Global Patient Experience Data Navigator is the only publicly available toolkit developed with a multi-stakeholder and disease-agnostic approach providing taxonomically grouped resources to optimize the collection and collation of PXD for patient benefit. Future work will aim to further engage patients by adding a PE dimension to the Navigator.