Collection Of Patient Experience Data Research Articles

Patient experience in a radiation therapy department pre- and during the COVID-19 pandemic.

Longitudinal collection of patient experience data promotes continual high-quality care and guides quality improvement (QI) work. The purpose of this study was to investigate patient experience in the radiation department during COVID-19 and compare results to previous data collected in 2019. Patient experience data was collected using the Your Voice Matters (YVM) survey. Recruitment occurred between April and June 2022. Consecutive patients were approached to complete the YVM regarding their consultation or radiation treatment appointment. The proportion of patients with positive experience scores was calculated for 2022 results. Unadjusted results were compared between 2019 and 2022. The adjusted analysis included logistic regression modelling to evaluate factors associated with an overall positive experience. Content analysis was completed for current qualitative data. Overall, 400 patients completed the YVM regarding their consultation or radiation treatment. The most favorable experiences included polite reception staff and feeling respected and listened to. Compared to 2019, there was no significant difference in overall experience scores. Results showed improvements in wait times for consultations (p < 0.01) and treatments (p < 0.01). Despite improvements, wait times and contacting the clinic remain areas with the lowest scores. In 2022, patients with breast cancer had greater odds of a positive experience compared to lung. Patients at our institution continued to have positive experiences over time, despite the pandemic. Improvements were most evident with wait times. Other items including contacting the clinic remain areas for improvement. These results guided various QI work in our department to improve communication, clinic flow, and other aspects of patient experience.

Using Learning Health System Principles to Embed Patient Experience Data in Primary Care: A Qualitative Investigation.

Though an important component of high-quality healthcare, the routine collection of patient experience data is limited in primary care, as is the evidence for how this data is being used for quality improvement. This study used a learning health system (LHS) framework to describe how a university-affiliated community general practice is integrating patient experience data into service and quality improvement efforts, and to identify barriers and facilitators. A co-designed qualitative case study was conducted with academic researchers and staff from a university-affiliated general practice in Australia. Semi-structured interviews were conducted in April 2024 with practice staff, and transcripts were deductively coded according to a five-domain learning health systems framework, and with additional codes capturing barriers and facilitators. Eighteen (53%) practice staff were interviewed, including general practitioners (n=11), a practice nurse (n=1), and administrative staff (n=6). Participants identified multiple methods through which the practice captured the patient experience that spanned all domains of the LHS framework. However, there was less evidence of a coherent quality improvement strategy being employed, with associated barriers identified around staff workloads, training, and existing government funding policies. Key facilitators to the use of patient experience data included: membership of a larger health organisation and university; key dedicated administrative and clinical roles; and effective leadership, governance structures and policies to support continuous learning and drive service improvement. This study presents a case example of how patient experience data is being integrated into general practice and identifies key barriers and facilitators to initiating and translating this data for continuous healthcare improvement. By mapping the use of patient experience data to a LHS framework, this study shows how LHS principles can be applied to primary care to facilitate the capture and use of patient experience data on an ongoing basis.

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. &#x0D; Ontario Health Team context&#x0D; 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.&#x0D; Approaches within our QI Collaboration&#x0D; -Collecting and sharing patient experience measures as part of Best Practice Guideline implementation for Person &amp; Family-Centred Care;&#x0D; -Strengthening involvement of community members; co-creating our 2022 collaborative Quality Improvement Plan with diverse partners;&#x0D; -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;&#x0D; -Focusing on priority neighbourhoods to improve health equity; and building QI capacity with teams of Community Health Ambassadors within those neighbourhoods.&#x0D; Key Learnings&#x0D; 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). &#x0D; 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. &#x0D; 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.&#x0D; 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.

Building from Patient Experiences to Deliver Patient-Focused Healthcare Systems in Collaboration with Patients: A Call to Action

Patients’ experiences of their diagnosis, condition, and treatment (including the impact on their lives), and their experiences surrounding expectations of care, are becoming increasingly important in shaping healthcare systems that meet the evolving needs and priorities of different patient communities over time; this is an ongoing goal of all healthcare stakeholders. Current approaches that capture patient experiences with data are fragmented, resulting in duplication of effort, numerous requests for information, and increased patient burden. Application of patient experience data to inform healthcare decisions is still emerging and there remains an opportunity to align diverse stakeholders on the value of these data to strengthen healthcare systems. Given the collective value of understanding patient experiences across multiple stakeholder groups, we propose a more aligned approach to the collection of patient experience data. This approach is built on the principle that the patients’ experiences are the starting point, and not just something to be considered at the end of the process. It must also be based on meaningful patient engagement, where patients are collaborators and decision makers at each step, thereby ensuring their needs and priorities are accurately reflected. The resulting data and evidence should be made available for all stakeholders, to inform their decision making and healthcare strategies in ways that meet patient priorities. We call for multi-stakeholder collaboration that will deliver healthcare systems and interventions that are better centered around and tailored to patient experiences, and that will help address patients’ unmet needs.

Dementia‐related psychosis symptoms and impact from the patient and care partner (caregiver) perspective: An observational, prospective study to describe the patient experience

AbstractBackgroundThis study aimed to describe the person‐centered experience of symptoms and impact of dementia‐related psychosis (DRP) from a patient and care partner (CP) perspective.MethodsThis observational, non‐interventional, prospective study collected patient experience data to understand the impact of DRP in persons with various dementia subtypes. Qualitative interviews were conducted with persons or their CP who have a clinical diagnosis of all‐cause dementia with psychotic symptoms, recruited through physician referrals. The quantitative online survey was completed by persons with self‐reported DRP or their CP recruited by advocacy groups: UsAgainstAlzheimer’s and the Lewy Body Dementia Association. CP burden was beyond the scope of this study.ResultsSixteen individuals (1 patient, 15 CP) participated in the qualitative interview. The most commonly reported symptoms of DRP were visual hallucinations (88%), auditory hallucinations (69%), and persecutory delusions (56%). Participants described an impact of DRP on activities of daily living (75%), sleep (63%), family life (56%), and safety concerns (56%). The quantitative portion was completed by 212 participants (26 patients, 186 CP). DRP symptoms most frequently reported by patients were visual hallucinations (89%), auditory hallucinations (54%), and distortion of senses (54%); those reported by CP were paranoid delusions (76%), visual hallucinations (75%), and lack of trust for loved ones (52%). For patients with recent visual hallucinations, 61% of patients and 70% of CP reported experiencing this symptom on a weekly basis. When asked to rank the impact on the patient’s life, patients reported that visual hallucinations were the most impactful symptom (Figure 1) whereas CP reported paranoid delusions/false beliefs as most impactful, followed by visual hallucinations (Figure 2). Difficulty differentiating what is real from what is not real, increased anxiety, and effects on personal relationships were the most common types of impacts reported by both patients and CP. Most patients (&gt;40%) were not receiving medications for DRP.ConclusionsPersons with DRP experience hallucinations and delusions that have a substantial impact on their lives. Here, patient experience data demonstrate that there is a need for treatments to reduce the symptoms and impacts of DRP.

Producing a new website for a paediatric liaison mental health team with our service users

IntroductionOnline resources are an important source of information about mental health issues and services for children and young people. Our service’s website had an out-of-date appearance and was aimed at...

410 - Dementia-related Psychosis Symptoms and Impact from the Patient and Care Partner (Caregiver) Perspective: an Observational, Prospective Study to Describe the Patient Experience

Background:This study aimed to describe the person-centered experience of symptoms and impact of dementia-related psychosis (DRP) from a patient and care partner (CP) perspective.Methods:This observational, non-interventional, prospective study collected patient experience data to understand the impact of DRP in persons with various dementia subtypes. Qualitative interviews were conducted with persons or their CP who have a clinical diagnosis of all-cause dementia with psychotic symptoms, recruited through physician referrals. The quantitative online survey was completed by persons with self-reported DRP or their CP recruited by advocacy groups: UsAgainstAlzheimer’s and the Lewy Body Dementia Association. CP burden was beyond the scope of this study.Results:Sixteen individuals (1 patient, 15 CP) participated in the qualitative interview. The most commonly reported symptoms of DRP were visual hallucinations (88%), auditory hallucinations (69%), and persecutory delusions (56%). Participants described an impact of DRP on activities of daily living (75%), sleep (63%), family life (56%), and safety concerns (56%).The quantitative portion was completed by 212 participants (26 patients, 186 CP). DRP symptoms most frequently reported by patients were visual hallucinations (89%), auditory hallucinations (54%), and distortion of senses (54%); those reported by CP were paranoid delusions (76%), visual hallucinations (75%), and lack of trust for loved ones (52%). For patients with recent visual hallucinations, 61% of patients and 70% of CP reported experiencing this symptom on a weekly basis. When asked to rank the impact on the patient’s life, patients reported that visual hallucinations were the most impactful symptom whereas CP reported paranoid delusions/false beliefs as most impactful, followed by visual hallucinations. Difficulty differentiating what is real from what is not real, increased anxiety, and effects on personal relationships were the most common types of impacts reported by both patients and CP. Most patients (&gt;40%) were not receiving medications for DRP.Conclusions:Persons with DRP experience hallucinations and delusions that have a substantial impact on their lives. Here, patient experience data demonstrate that there is a need for treatments to reduce the symptoms and impacts of DRP.Study Sponsored By: ACADIA Pharmaceuticals Inc.DisclosuresTF is a consultant with Frangiosa &amp; Associates, LLC.VB and AT have no relevant financial relationships to disclose.TB, BK, and VA are employees of and may hold stock and/or stock options with ACADIA Pharmaceuticals Inc.

Investigation of Geographic and Macrolevel Variations in LGBTQ Patient Experiences: Longitudinal Social Media Analysis.

BackgroundDiscrimination in the health care system contributes to worse health outcomes among lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients.ObjectiveThe aim of this study is to examine disparities in patient experience among LGBTQ persons using social media data.MethodsWe collected patient experience data from Twitter from February 2013 to February 2017 in the United States. We compared the sentiment of patient experience tweets between Twitter users who self-identified as LGBTQ and non-LGBTQ. The effect of state-level partisan identity on patient experience sentiment and differences between LGBTQ users and non-LGBTQ users were analyzed.ResultsWe observed lower (more negative) patient experience sentiment among 13,689 LGBTQ users compared to 1,362,395 non-LGBTQ users. Increasing state-level liberal political identification was associated with higher patient experience sentiment among all users but had stronger effects for LGBTQ users.ConclusionsOur findings highlight that social media data can yield insights about patient experience for LGBTQ persons and suggest that a state-level sociopolitical environment influences patient experience for this group. Efforts are needed to reduce disparities in patient care for LGBTQ persons while taking into context the effect of the political climate on these inequities.

Adaptation and preliminary testing of the registered nursing forecasting (RN4CAST) nurse survey for use in the ambulatory chemotherapy setting.

This study aimed to adapt the Registered Nurse Forecast (RN4CAST) nurse survey making it appropriate to assess the working environments of ambulatory chemotherapy nurses, specifically focusing on care left undone. A two-phase approach was used. Firstly, cognitive interviews were conducted to adapt role specific sections of the RN4CAST nurses survey. The interviews were analysed to assess comprehension, retrieval, judgement and response processes to create the RN4CAST-chemotherapy assessment tool (CAT) survey. Secondly, a single centre feasibility study was undertaken to assess acceptability of the RN4CAST-CAT survey in an ambulatory chemotherapy setting. Results of the feasibility study were analysed using descriptive statistics and compared with routinely collected patient experience data. The cognitive interviews (n=6) resulted in important amendments to the RN4CAST-CAT. Response rate to the feasibility study was acceptable at 57% (n=12) and item completion rate was good (on average only 1 response missing per item). On average nurses looked after nine patients per shift, administered seven chemotherapy treatments and worked an hour and 10min over their contracted time. Main areas of care left undone were related to verbal communication with patients and assessing patient comorbidities and toxicities. We were able to adapt the RN4CAST to make it suitable for use in the ambulatory chemotherapy setting. Our study offers preliminary evidence that the RN4CAST-CAT and methodology are feasible and acceptable within the ambulatory chemotherapy setting. Larger scale testing is now required and if validated the RN4CAST-CAT has the potential to provide useful insights into the impact of nursing workload on staff experience, patient care and outcomes on ambulatory chemotherapy settings.

How to automatically turn patient experience free-text responses into actionable insights: a natural language programming (NLP) approach

BackgroundPatient experience surveys often include free-text responses. Analysis of these responses is time-consuming and often underutilized. This study examined whether Natural Language Processing (NLP) techniques could provide a data-driven, hospital-independent solution to indicate points for quality improvement.MethodsThis retrospective study used routinely collected patient experience data from two hospitals. A data-driven NLP approach was used. Free-text responses were categorized into topics, subtopics (i.e. n-grams) and labelled with a sentiment score. The indicator ‘impact’, combining sentiment and frequency, was calculated to reveal topics to improve, monitor or celebrate. The topic modelling architecture was tested on data from a second hospital to examine whether the architecture is transferable to another hospital.ResultsA total of 38,664 survey responses from the first hospital resulted in 127 topics and 294 n-grams. The indicator ‘impact’ revealed n-grams to celebrate (15.3%), improve (8.8%), and monitor (16.7%). For hospital 2, a similar percentage of free-text responses could be labelled with a topic and n-grams. Between-hospitals, most topics (69.7%) were similar, but 32.2% of topics for hospital 1 and 29.0% of topics for hospital 2 were unique.ConclusionsIn both hospitals, NLP techniques could be used to categorize patient experience free-text responses into topics, sentiment labels and to define priorities for improvement. The model’s architecture was shown to be hospital-specific as it was able to discover new topics for the second hospital. These methods should be considered for future patient experience analyses to make better use of this valuable source of information.

PND87 PARKINSON'S DISEASE EXPERIENCE FROM A PATIENT'S PERSPECTIVE: SYSTEMATIC REVIEW ON PATIENT REPORTED OUTCOMES

Parkinson’s disease remains a chronic condition with major unmet needs. Understanding the nature and extent of patient experiences is hampered by a lack of clarity about whether well-developed patient-reported outcomes (PROs) exist or which PRO instrument fits better for Parkinson’s disease. To better inform the selection of PROs that could potentially be used in future clinical trials, the objective was to identify and summarize PRO instruments that have been validated and/or used in the published literature of Parkinson's disease through a systematic literature review. A systematic search of computerized databases PubMed and PsycINFO was conducted between January 2000 and December 2019. Articles were included in the review based on predefined criteria;1)Adults with Parkinson's disease, 2)"Patient-reported” outcome and experience measures;3)Published in English language;4)Sample size >50. The literature screening was conducted by 2 independent reviewers. All of the included studies were assessed for quality. The search yielded a total of 215 articles from 2000 to 2019. The majority of studies are randomized control trials. Overall, we found 16 PROs in the published literature. The patient-reported outcome tool for advanced Parkinson's disease (PRO-APD) evaluates the perceptions of symptom severity and therapy expectations were rated on a Likert scale with score -3 to +3 (very worse to very much improved). Parkinson's disease symptom and severity were evaluated using 39-item Parkinson's Disease Questionnaire (PDQ-39), Freezing of Gait Questionnaire,MDT-PD(Munich Dysphagia Test-Parkinson's Disease), Unified Parkinson Disease Rating Scale. Some studies rated symptom severity on a Likert scale scoring from 0 to 7. The PROs were administered by clinician or patients. We also observed substantial variations in measuring disease symptoms and severity. As FDA’s 21st-century cure act recommends collecting patient experience data during the drug development process, this review systematically summarized patient-reported outcome measures that could be used in future clinical trials and help in understanding patient experience.

A Review of Best Practices for Monitoring and Improving Inpatient Pediatric Patient Experiences.

Achieving high-quality patient-centered care requires assessing patient and family experiences to identify opportunities for improvement. With the Child Hospital Consumer Assessment of Healthcare Providers and Systems Survey, hospitals can assess performance and make national comparisons of inpatient pediatric experiences. However, using patient and family experience data to improve care remains a challenge. We reviewed the literature on best practices for monitoring performance and undertaking activities aimed at improving pediatric patient and family experiences of inpatient care. We searched PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsychINFO. We included (1) English-language peer-reviewed articles published from January 2000 to April 2019; (2) articles based in the United States, United Kingdom, or Canada; (3) articles focused on pediatric inpatient care; (4) articles describing pediatric patient and family experiences; and (5) articles including content on activities aimed at improving patient and family experiences. Our review included 25 articles. Two researchers reviewed the full article and abstracted specific information: country, study aims, setting, design, methods, results, Quality Improvement (QI) initiatives performed, internal reporting description, best practices, lessons learned, barriers, facilitators and study implications for clinical practice, patient-experience data collection, and QI activities. We noted themes across samples and care settings. We identified 10 themes of best practice. The 4 most common were (1) use evidence-based approaches, (2) maintain an internal system that communicates information and performance on patient and family experiences to staff and hospital leadership, (3) use experience survey data to initiate and/or evaluate QI interventions, and (4) identify optimal times (eg, discharge) and modes (eg, print) for obtaining patient and family feedback. These correspond to adult inpatient best practices. Both pediatric and adult inpatient best practices rely on common principles of culture change (such as evidence-based clinical practice), collaborative learning, multidisciplinary teamwork, and building and/or supporting a QI infrastructure that requires time, money, collaboration, data tracking, and monitoring. QI best practices in both pediatric and adult inpatient settings commonly rely on identifying drivers of overall ratings of care, rewarding staff for successful implementation, and creating easy-to-use and easy-to-access planning and QI tools for staff.

Patient Experience Drivers of Overall Satisfaction With Care in Cancer Patients: Evidence From Responders to the English Cancer Patient Experience Survey.

Background:Surveys collecting patient experience data often contain a large number of items covering a wide range of experiences. Knowing which areas to prioritize for improvements efforts can be difficult.Objective:To examine which aspects of care experience are the key drivers of overall satisfaction with cancer care.Methods:Secondary analysis of the National Cancer Patient Experience Survey. Logistic regression was used to examine the relationship between overall satisfaction and 10 core questions covering aspects of experience applicable to all patients. Supplementary analyses examined a further 16 questions applying only to patients in certain groups or on specific treatment pathways.Results:Of 68 340 included patients, 58 697 (86%) rated overall satisfaction highly (8 or more out of 10). The strongest predictors of overall satisfaction across all models were responses to 2 questions on experience of care administration and care coordination (odds ratio [OR] = 2.11, 95% confidence interval [95% CI = 2.05-2.17, P < .0001; OR = 2.03, 95% CI = 1.97-2.09, P < .0001, respectively, per 1 standard deviation change).Conclusion:Focusing improvement efforts on care administration and coordination has potential to improve overall satisfaction with oncological care across diverse patient groups/care pathways.

PNS385 USING THE VARK MODEL TO AID QUALITATIVE DATA COLLECTION IN PEDIATRIC PATIENTS

Introducing the use of VARK modalities alongside ISPOR guidance to aid the collection of patient experience data in the pediatric population. The VARK learning preferences purports that people tend to prefer different modalities for communication and learning at different times in their lives. The four modality preferences are; visual, auditory, reading/writing, and kinesthetic. Different modalities can be learned throughout the life-span, however, children initially tend to prefer one learning style over another. Child interviews were conducted across various studies utilizing VARK principals and the ISPOR guidance for pediatric studies. The results of these studies, along with interviewer experience and feedback from experienced qualitative researchers were discussed and reviewed to generate feedback on best practices for interviewing children. When collecting qualitative data from children, the use of VARK principals increases child engagement, quality of the data, and allows them to communicate in their preferred style. Consideration of the available data indicated that children with a visual preference may prefer to develop a drawing or collage relating to their experience of their condition for discussion during the interview. In comparison, children who prefer reading/writing could be asked to draw the impact of their condition or presented with a list of words relating to their condition and asked to put them in a certain order or categories. The child with a kinesthetic preference may prefer creating a model of their symptoms using Play-Doh or other materials; whereas children with an auditory preference may prefer to discuss their condition. When collecting patient experience data in the pediatric population, VARK preference modalities could be incorporated alongside the ISPOR guidance for pediatric studies during protocol development. Doing so appears to increase data quality, engagement, and communication during child interviews, and could improve the use of pediatric data in studies.

Adapting Patient Experience Data Collection Processes for Lower Literacy Patient Populations Using Tablets at the Point of Care.

Patient experience surveys are widely used to capture the patient-reported quality of care and are increasingly being used for formal reporting purposes. There is evidence that certain patient subgroups are less likely to respond to traditional CAHPS surveys. As patient-facing technologies become more common, it is important to examine whether tablet-based patient experience surveys have the potential to promote responses from more diverse populations. To develop, gain perspectives about, and pilot an English and Spanish low-literacy adaptation of the Consumer Assessment of Healthcare Providers & Systems Clinician & Group Survey (CG-CAHPS) administered on a tablet device at the point of care. Cognitive testing and evaluation of a quality improvement pilot comparing a tablet-based adaptation and traditional paper-based versions of the CG-CAHPS survey. English-speaking and Spanish-speaking patients receiving primary care in an urban community clinic. To compare the acceptability of low-literacy tablet-based and traditional paper-based patient experience surveys, we examined the concordance of responses between survey modes and preferences for modality, as well as perspectives on usability and reporting care experiences. We examined demographic differences in responses to tablet-based versus mailed surveys from a quality improvement pilot. The majority of cognitive interview participants preferred a low-literacy, tablet-based survey over a paper-based survey with traditional wording. In a quality improvement pilot comparing tablet-based administration at the point of care versus mailed surveys, respondents to the tablet-based survey were more likely to be younger and Latino. If designed with patient input, tablet-based surveys have the potential to improve the collection of patient experience data among diverse populations.

AMCP Partnership Forum: Building the Foundation for Patient-Reported Outcomes-Infrastructure and Methodologies.

Section 3002 of the 21st Century Cures Act, which was signed into law in December 2016, requires the FDA to develop one or more sets of new guidances regarding the collection of patient experience data. To explore how patient-reported outcomes (PROs) can support value-based care and discuss challenges to using PROs more widely, the Academy of Managed Care Pharmacy (AMCP) convened a stakeholder forum in 2017 on PROs and the role they can play in defining the value of health care interventions. This forum achieved consensus on the importance of PROs in improving patient care through implementing value-based payment models and the need for strong organizational systems to fully adopt and use PROs in health care decision making. To explore strategies to build on these findings and implement them in practice, AMCP convened a second forum on October 25, 2018, in Orlando, FL, to focus on identifying specific methods and infrastructure to support the ideal use of PROs in practice. In light of the FDA's plans to propose new guidance for incorporating PROs in the regulatory process, this forum focused on the following: (a) describing the current state of using PROs for FDA regulatory and value-based coverage decisions; (b) defining a process for collecting and sharing PROs with the FDA and managed care organizations for value-based decisions; (c) identifying the necessary infrastructure needed to support the ideal use of PROs; and (d) identifying the health information technology strategies needed to support PRO use across managed care stakeholders. Strategies for the development and implementation of PROs were discussed throughout the forum, including a focus on appropriate activities to address the needs of patients, health care providers, managed care organizations, and life science companies and researchers. Health care leaders representing health plans, integrated delivery systems, pharmacy benefit managers, employers, national associations of health care professionals, patient advocacy organizations, health infrastructure technology companies and biopharmaceutical companies participated in the forum. The AMCP forum was supported in collaboration with Allergan, Amgen, Boehringer Ingelheim, Bristol-Myers Squibb, Merck, Novo Nordisk, PhRMA, Sanofi, Takeda, and Xcenda. DISCLOSURES: The AMCP Partnership Forum and the development of the proceedings document were supported by Allergan, Amgen, Boehringer Ingelheim, Bristol-Myers Squibb, Merck, Novo Nordisk, PhRMA, Sanofi, Takeda, and Xcenda.

Improving the Usefulness and Use of Patient Survey Programs: National Health Service Interview Study.

BackgroundA growing body of evidence suggests a concerning lag between collection of patient experience data and its application in service improvement. This study aims to identify what health care staff perceive to be the barriers and facilitators to using patient-reported feedback and showcase successful examples of doing so.ObjectiveThis study aimed to apply a systems perspective to suggest policy improvements that could support efforts to use data on the frontlines.MethodsQualitative interviews were conducted in eight National Health Service provider locations in the United Kingdom, which were selected based on National Inpatient Survey scores. Eighteen patient-experience leads were interviewed about using patient-reported feedback with relevant staff. Interviews were transcribed and underwent thematic analysis. Staff-identified barriers and facilitators to using patient experience feedback were obtained.ResultsThe most frequently cited barriers to using patient reported feedback pertained to interpreting results, understanding survey methodology, presentation of data in both national Care Quality Commission and contractor reports, inability to link data to other sources, and organizational structure. In terms of a wish list for improved practice, staff desired more intuitive survey methodologies, the ability to link patient experience data to other sources, and more examples of best practice in patient experience improvement. Three organizations also provided examples of how they successfully used feedback to improve care.ConclusionsStaff feedback provides a roadmap for policy makers to reconsider how data is collected and whether or not the national regulations on surveys and patient experience data are meeting the quality improvement needs of local organizations.

An evaluation of a near real-time survey for improving patients’ experiences of the relational aspects of care: a mixed-methods evaluation

BackgroundThe Francis Report (of 2013) provided many recommendations to improve compassionate care in NHS organisations, including more widespread use of real-time feedback (RTF) to collect patient experience data. This research directly addressed these recommendations and aimed to provide an evidence-based toolkit to support NHS quality improvements.ObjectivesTo develop and validate a survey of compassionate care for use in near real time on elderly care wards and accident and emergency (A&amp;E) departments. This research also evaluated the effectiveness of the RTF approach for improving relational aspects of care and provides suggestions for how the approach can be used by other hospitals to strengthen compassionate care.DesignThe research utilised a mixed-methods design, using quantitative, qualitative and participatory research approaches to collect patients’ experiences of relational care and the views of NHS staff in an effort to evaluate the processes and impacts of near real-time feedback (NRTF) data collection. Data sources included a NRTF patient experience survey, weekly volunteer diaries, staff interviews and surveys, workshops and meetings with case study sites.SettingThe research was carried out across six case study sites across England, in wards that predominantly serve elderly patients and in A&amp;E departments.ParticipantsThe 3928 participants in the patient experience survey were inpatients on elderly care wards, or persons who had sought medical care in A&amp;E. Frontline staff, service leads, senior management and volunteers also took part in surveys (n = 274) and interviews (n = 82) designed to understand the staff perspectives and opinions of collecting patient experience data.InterventionsA patient experience survey was implemented using a tablet computer-based methodology, facilitated by trained volunteers. Responses were used alongside feedback from staff to evaluate the use of a NRTF approach as a method for improving patient experiences of relational aspects of care.Main outcome measuresThe patient experience survey measured relational aspects of care. Another outcome measure was improvements to care as planned, implemented and reported by staff.ResultsA small but statistically significant improvement (p = 0.044) in relational aspects of care over the course of the study was noted overall. Staff implemented a variety of improvements to enhance communication with patients.LimitationsMaintaining volunteer and staff engagement throughout the study was difficult. Few surveys were completed per ward or department each week. This made examining trends in patient experiences over time challenging.ConclusionsNear real-time feedback offers an effective approach for monitoring and improving relational aspects of care.Future workStaff frequently expressed a view that volunteers’ interactions with patients while administering the survey were themselves beneficial to patients. Future research should examine the impact of volunteer interactions with patients on their experiences of relational aspects of care.Study registrationThe project is registered on the Clinical Research Network portfolio under the primary trial identification number 18449.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

OP96 Standardizing Collection Of Patient-Reported Experience Measures To Drive Service Improvement In Wales

Introduction:Co-production relates to patients and health professionals working in equal partnership with shared decision-making. Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are increasingly being used to involve patients and measure healthcare quality. We set out to develop a set of universal experience questions for use across Wales. These will be used in various settings, including the national electronic PROMs and PREMs platform, which is already collecting outcome data across Wales and has received over 7,000 responses to date.Methods:Patient experience leads and clinical leads were invited to a workshop to discuss standardized PREMs collection in Wales, with all health boards and trusts represented. It was agreed that quantitative patient experience data collection, while limited, would be a pragmatic way to collect responses from a large cohort. It was agreed that a previously developed set of PREMs questions could be adapted for use in all healthcare settings. Patient focus groups reduced the number of questions to a shortlist of those considered most important by patients. Wording was improved and an additional question was added.Results:In partnership with stakeholders we developed and agreed on a set of universal PREMs questions. These have been added to the national electronic platform, with collection commencing imminently. This will allow patients accessing secondary care in Wales to provide PREMs and PROMs responses.Conclusions:Development of a standardized set of PREMs has allowed us to initiate collection on a national basis. Addition of PREMs to the national electronic platform provides a unique means of collecting large volumes of data consistently, allowing us to benchmark across and within organizations. It will also allow experience teams to target improvement initiatives and identify good practice. Together with outcomes responses, the data will be used to measure experience of care in Wales.

Measuring Patient Experiences: Is It Meaningful and Actionable?

Performance measurement must be meaningful to those being asked to contribute data and to the clinicians who are collecting the information. It must be actionable if performance measurement and reporting is to influence health system transformation. To date, measuring patient experiences in all parts of the healthcare system in Canada lags behind other countries. More attention needs to be paid to capturing patients with complex intersecting health and social problems that result from inequitable distribution of wealth and/or underlying structural inequities related to systemic issues such as racism and discrimination, colonialism and patriarchy. Efforts to better capture the experiences of patients who do not regularly access care and who speak English or French as a second language are also needed. Before investing heavily into collecting patient experience data as part of a performance measurement system the following ought to be considered: (1) ensuring value for and buy-in from clinicians who are being asked to collect the data and/or act on the results; (2) investment in the infrastructure to administer iterative, cost-effective patient/family experience data collection, analysis and reporting (e.g., automated software tools) and (3) incorporating practice support (e.g., facilitation) and health system opportunities to integrate the findings from patient experience surveys into policy and practice. Investment into the infrastructure of measuring, reporting and engaging clinicians in improving practice is needed for patient/caregiver experiences to be acted upon.