Integrating Patient‐reported Experience (PRE) in a multistage approach to study access to health services for women with chronic illness and migration experience

BackgroundPatient‐reported Experience (PRE) is an emerging concept integrating patient perspectives and amplifying voices often marginalized in discussions surrounding health systems. However, it remains a challenge to use and integrate PREs when studying patient agency and access to quality services, particularly with data from multiple sources. In this article, using study materials from the Swiss MIWOCA project, we present and reflect upon a multistage PRE approach to study healthcare access.MethodsThe MIWOCA project, a study on healthcare access and quality among immigrant women with chronic illnesses living in Switzerland, provided data from multiple sources for the integration of PRE data. These sources included interviews with women (n = 48), two focus group discussions with women (n = 15), interviews with service providers (n = 12) and observations from stakeholder dialogues (n = 3). In addition, we utilized field notes, focus group illustration maps, patient vignettes and policy briefs to develop a multistage data linking model. PRE data served as starting themes and reference topics in each of the interlinked stages of knowledge production.ResultsDeploying PREs, we coherently linked the data from preceding stages and used them to inform subsequent stages. This, in turn, enabled us to identify, reflect and rectify factors limiting immigrant women''s agency and access to quality services. Ultimately, the approach engaged patients as knowledge co‐producers for system‐level changes. This knowledge was transformed into a set of practice recommendations and a policy brief addressing ways to improve health systems to better serve immigrant women in Switzerland.ConclusionsBuilding on PREs to systematically combine multiple data sources and engage patients continuously can improve our understanding of barriers in health systems. Beyond individual patient‐doctor encounters, a multistage PRE approach can identify structural problems and provide clues for resolving them at the systems level. The PREs approach presented may serve as an example and encourage more public health experts to consider PREs in future research and practice.Patient and Public ContributionWomen with chronic illness and immigration experience contributed to interview‐guideline development, provided PREs in interviews, identified priority areas for health‐service change and actively participated in the development of practice recommendations.     

Chronic and rare disease patients' access to healthcare services during a health crisis: The example of the COVID‐19 pandemic in Turkey

ObjectiveThe restructuring of healthcare provision for the coronavirus disease 2019 (COVID‐19) pandemic caused disruptions in access for patients with chronic or rare diseases. This study explores the experiences of patients with chronic or rare diseases in access to healthcare services in Turkey during the COVID‐19 pandemic.MethodsSemi‐structured interviews were conducted with representatives (n = 10) of patient organisations (n = 9) based in Istanbul. Thematic analysis with an inductive approach was conducted to analyse the responses obtained through the interviews.ResultsThe lack of clinical information at the beginning of the pandemic caused fear among patients with chronic or rare diseases. Patients experienced obstacles in access to healthcare services because of the overcrowding of hospitals with COVID‐19 patients. Some treatment procedures were cancelled or postponed by physicians. Of these procedures, some were medically vital for those patients, leading to or exacerbating further health problems. The most positive measures that patients identified were where the Social Security Institution introduced regulations to facilitate access to prescribed medicine for chronic patients. Information exchange between the doctors and their patients was important to alleviate the uncertainty and reduce the anxiety among patients.DiscussionAccess problems experienced by patients during the COVID‐19 pandemic were a complex mix of factors including shortages and physical barriers, but also perceptions of barriers. The findings of this study show that patient organisations can provide insights on disease‐specific experiences and problems that are very valuable to improve access to healthcare services to achieve the universal health coverage target. Hence, this study emphasises the inclusion of patient organisations in decision‐making processes during times of health crises.Public ContributionRepresentatives of patient organisations participated in the interviews.     

Use of co‐design methodology in the development of cardiovascular disease secondary prevention interventions: A scoping review

IntroductionThere is growing evidence to support the use of co‐design in developing interventions across many disciplines. This scoping review aims to examine how co‐design methodology has been used in the development of cardiovascular disease (CVD) secondary prevention interventions within health and community settings.MethodsWe searched four academic databases for studies that used the co‐design approach to develop their intervention. Studies were included if consumers (adults with CVD) and key stakeholders (e.g. clinicians, service providers) were involved in the co‐design process. The review focused on methodology rather than traditional study outcomes; therefore, co‐design processes and activities were extracted and evaluated against a selected co‐design framework.ResultsTwenty‐two studies were included in this review. Studies were implemented across various settings with consumers and stakeholder groups most frequently consisting of patients and healthcare professionals, respectively. Most studies specifically stated that they used a ‘co‐design’ approach (n = 10); others used terms such as participatory action research (n = 3), user‐centred design (n = 3) and community‐based participatory research (n = 2). Although there was variability in terminology, co‐design processes, and participants, all studies adhered to the key principles of consumer engagement. Predominant co‐design activities included semistructured interviews, focus groups, co‐design/development workshops and advisory group meetings. Intervention effectiveness was assessed in eight studies showing mixed results.ConclusionsThis review provides an overview of how the co‐design approach has previously been used in the development of CVD secondary prevention interventions. These findings provide methodological considerations that can guide researchers and healthcare services when implementing co‐design to develop feasible and acceptable interventions that can improve outcomes for CVD populations.Patient or Public ContributionNo patients, service users, caregivers, people with lived experience or members of the public were involved in this scoping review. This review article was written by academics who have undertaken a significant amount of co‐design work with consumers and stakeholders.     

Implementing culturally competent transplant care and implications for reducing health disparities: A prospective qualitative study

BackgroundDespite available evidence‐based interventions that decrease health disparities, these interventions are often not implemented. Northwestern Medicine''s^® Hispanic Kidney Transplant Program (HKTP) is a culturally and linguistically competent intervention designed to reduce disparities in living donor kidney transplantation (LDKT) among Hispanics/Latinos. The HKTP was introduced in two transplant programs in 2016 to evaluate its effectiveness.ObjectiveThis study assessed barriers and facilitators to HKTP implementation preparation.MethodsInterviews and group discussions were conducted with transplant stakeholders (ie administrators, nurses, physicians) during implementation preparation. The Consolidated Framework for Implementation Research (CFIR) guided interview design and qualitative analysis.ResultsForty‐four stakeholders participated in 24 interviews and/or 27 group discussions. New factors, not found in previous implementation preparation research in health‐care settings, emerged as facilitators and barriers to the implementation of culturally competent care. Implementation facilitators included: stakeholders’ focus on a moral imperative to implement the HKTP, personal motivations related to their Hispanic heritage, and perceptions of Hispanic patients’ transplant education needs. Implementation barriers included: stakeholders’ perceptions that Hispanics’ health insurance payer mix would negatively impact revenue, a lack of knowledge about LDKT disparities and patient data disaggregated by ethnicity/race, and a perception that the family discussion component was immoral because of the possibility of coercion.Discussion and ConclusionsOur study identified novel barriers and facilitators to the implementation preparation of a culturally competent care intervention. Healthcare administrators can facilitate organizations’ implementation of culturally competent care interventions by understanding factors challenging care delivery processes and raising clinical team awareness of disparities in LDKT.     

The effects of a mobile application for patient participation to improve patient safety

BackgroundPatient participation in patient safety activities in care processes is a fundamental element of safer care. Patients play an important role in preventing patient safety incidents and improving health outcomes. Therefore, healthcare providers need to develop and provide educational materials and actionable tools for patient participation.ObjectivesThis study aimed to develop a mobile application for health consumers'' participation and evaluate the effect of the mobile application on improving health consumers'' participation in patient safety.MethodsA quasi‐experimental design was adopted. We developed a mobile application on the basis of a needs assessment, literature review, compilation of patient safety topics, and validity testing of the application. The target population included Korean adults aged between 30 and 65 years who had visited a medical institution more than once within the most recent 6 months. The intervention group received patient participation training by using the mobile application, Application for Patient Participation in Safety Enhancement, for 2 months. The primary outcome variables were patient safety knowledge, self‐efficacy of participation, willingness to participate and experience of patient participation in patient safety activities. End‐user satisfaction was assessed using a questionnaire. To assess participants'' experiences with the intervention, qualitative data were collected through a focus group interview and open‐ended responses to an end‐user satisfaction survey.ResultsThe intervention group (n = 60) had significantly higher overall average scores than the control group (n = 37) with regard to patient safety knowledge (p < .001), self‐efficacy of participation (p = .001), willingness to participate (p = .010) and experience of participation (p = .038) in the post‐survey. The total mean end‐user satisfaction score was 3.56 ± 0.60. The participants expressed the realization that patients could play an important role in improving patient safety.ConclusionsThis study demonstrated that educating health consumers through a mobile application with useful information improves patient participation in patient safety activities. Educational materials and patient participation tools could motivate health consumers'' health‐related behaviours.Patient or Public ContributionPatients were involved during the programme development and evaluation.     

Clinician perspectives on clinical decision support systems in lung cancer: Implications for shared decision‐making

BackgroundLung cancer treatment decisions are typically made among clinical experts in a multidisciplinary tumour board (MTB) based on clinical data and guidelines. The rise of artificial intelligence and cultural shifts towards patient autonomy are changing the nature of clinical decision‐making towards personalized treatments. This can be supported by clinical decision support systems (CDSSs) that generate personalized treatment information as a basis for shared decision‐making (SDM). Little is known about lung cancer patients'' treatment decisions and the potential for SDM supported by CDSSs. The aim of this study is to understand to what extent SDM is done in current practice and what clinicians need to improve it.ObjectiveTo explore (1) the extent to which patient preferences are taken into consideration in non‐small‐cell lung cancer (NSCLC) treatment decisions; (2) clinician perspectives on using CDSSs to support SDM.DesignMixed methods study consisting of a retrospective cohort study on patient deviation from MTB advice and reasons for deviation, qualitative interviews with lung cancer specialists and observations of MTB discussions and patient consultations.Setting and ParticipantsNSCLC patients (N = 257) treated at a single radiotherapy clinic and nine lung cancer specialists from six Dutch clinics.ResultsWe found a 10.9% (n = 28) deviation rate from MTB advice; 50% (n = 14) were due to patient preference, of which 85.7% (n = 12) chose a less intensive treatment than MTB advice. Current MTB recommendations are based on clinician experience, guidelines and patients'' performance status. Most specialists (n = 7) were receptive towards CDSSs but cited barriers, such as lack of trust, lack of validation studies and time. CDSSs were considered valuable during MTB discussions rather than in consultations.ConclusionLung cancer decisions are heavily influenced by clinical guidelines and experience, yet many patients prefer less intensive treatments. CDSSs can support SDM by presenting the harms and benefits of different treatment options rather than giving single treatment advice. External validation of CDSSs should be prioritized.Patient or Public ContributionThis study did not involve patients or the public explicitly; however, the study design was informed by prior interviews with volunteers of a cancer patient advocacy group. The study objectives and data collection were supported by Dutch health care insurer CZ for a project titled ‘My Best Treatment’ that improves patient‐centeredness and the lung cancer patient pathway in the Netherlands.     

Validation analysis of a composite real‐world mortality endpoint for patients with cancer in the United States

ObjectiveWe expanded the previous assessment of a mortality variable suited for real‐world evidence‐focused oncology research.Data sourceWe used a nationwide electronic health record (EHR)‐derived de‐identified database.Data collectionWe included patients with at least 1 of 18 cancer types between January 1, 2011 and December 31, 2017. Patient‐level structured data (EHRs, obituaries, and Social Security Death Index) and unstructured EHR data (abstracted) were linked to generate a composite mortality variable.Study designWe benchmarked sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV), and ±15‐day agreement against the National Death Index (NDI). Real‐world overall survival (rwOS) was estimated using the Kaplan‐Meier method. We performed sensitivity analyses using a smaller patient cohort that underwent next‐generation sequencing testing.Principal findingsCompared with the NDI across 18 cancer types (overall N = 160 436): sensitivity, 83.9%‐91.5% (17/18 cancer types had sensitivity ≥85.0%); specificity, 93.5%‐99.7%; PPV, 96.3%‐98.3%; NPV, 75.0%‐98.7%; ±15‐day agreement, 95.6%‐97.6%; and median rwOS estimates ranging from 2.8% to 12.7% greater. Sensitivity analysis results (n = 17 540) were consistent with the main analysis.ConclusionsAcross all cancer types analyzed, this composite mortality variable showed high sensitivity, specificity, PPV, NPV, and ±15‐day agreement, and yielded median rwOS values modestly overestimated when compared to NDI‐based results.     

Development of an inflammatory bowel disease (IBD) Patient‐Reported Experience Measure (PREM): A patient‐led consensus work and ‘think aloud’ study for a quality improvement programme

BackgroundPatient‐Reported Experience Measures (PREMs) are key in improving healthcare quality, but no PREM exists for inflammatory bowel disease (IBD). This study aimed to co‐produce a PREM with IBD service users for IBD service evaluation and quality improvement programme.MethodsA pool of 75 items was drawn from published survey instruments covering interactions with services and aspects of living with IBD. In Stage 1, during two workshops, eight expert service users reduced candidate items through a ranked‐choice voting exercise and suggested further items. During Stage 2, 18 previously uninvolved people with IBD assessed the face and content validity of the candidate items in ‘Think Aloud’ interviews. During two final workshops (Stage 3), the expert service users removed, modified and added items based on the interview findings to produce a final version of the PREM.ResultsStage 1 generated a draft working PREM mapped to the following four domains: Patient‐Centred Care; Quality; Accessibility; Communication and Involvement. The PREM included a set of nine items created by the expert group which shifted the emphasis from ‘self‐management’ to ‘living with IBD’. Stage 2 interviews showed that comprehension of the PREM was very good, although there were concerns about the wording, IBD‐relevance and ambiguity of some items. During the final two workshops in Stage 3, the expert service users removed 7 items, modified 15 items and added seven new ones based on the interview findings, resulting in a 38‐item PREM.ConclusionsThis study demonstrates how extensive service user involvement can inform PREM development.Patient or Public ContributionPatients were involved as active members of the research team and as research participants to co‐produce and validate a PREM for IBD services. In Stage 1, eight expert service users (‘the expert group’) reduced candidate items for the PREM through a voting exercise and suggested new items. During Stage 2, 18 previously uninvolved people with IBD (the ‘think aloud’ participants) assessed the validity of the candidate items in ‘Think Aloud’ interviews as research participants. In Stage 3, the expert group removed, changed and added items based on the interview findings to produce a final version of the 38‐item PREM. This study shows how service user involvement can meaningfully inform PREM development.     

Research‐ and health‐related youth advisory groups in Canada: An environmental scan with stakeholder interviews

BackgroundEngaging youth throughout the research process improves research quality and outcomes. Youth advisory groups provide one way for youth to express their opinions on relevant issues.ObjectiveThis study aimed to identify research‐ and health‐related youth advisory groups (‘groups’) in Canada and understand the best practices of these groups.MethodsGoogle searches and supplementary methods were used to identify relevant groups in Canada. Group information was extracted from websites or through interviews with key informants.ResultsWe identified 40 groups. Groups were commonly part of a hospital/healthcare facility, nonprofit/health organization or research group. The majority focused on a specific content area, most commonly, mental health. Over half the groups advised on health services. Members'' ages ranged from 9 to 35 years. The number of members ranged from 5 to 130. Interviews (n = 12) identified seven categories relating to group practices: (a) group purpose/objectives, (b) group development, (c) group operations, (d) group structure, (e) adult involvement, (f) membership and recruitment and (g) group access. Challenges and facilitators to the success of groups were described within the following themes: (a) retaining engagement, (b) creating a safe environment and (c) putting youth in positions of influence. Advice and recommendations were provided regarding the development of a new group.ConclusionThis study provides a comprehensive overview of research‐ and health‐related youth advisory groups in Canada. This information can be used to identify groups that stakeholders could access as well as inform the development of a new group.Patient or Public ContributionYouth advisory group representatives were interviewed as part of the study.     

Experiences of parents whose children participated in a longitudinal follow‐up study

BackgroundLong‐term follow‐up is necessary to understand the impact of perinatal interventions. Exploring parents'' motives and experiences in consenting to their children taking part in longitudinal studies and understanding what outcomes are important to families may enhance participation and mitigate the loss to follow‐up. As existing evidence is largely based on investigators'' perspectives using Western samples, the present pilot study explored parents'' perspectives in a multicultural New Zealand context.MethodsData were generated using semi‐structured interviews with parents whose children had participated in a longitudinal study after neonatal recruitment. Parents'' experiences of being part of the study were analysed thematically using an inductive approach.ResultsParents (n = 16) were generally happy with the outcomes measured. Additionally, parents were interested in lifelong goals such as the impact of parental diabetes. We identified three themes: (1) Facilitators: Research participation was aided by motives and parent and research characteristics such as wishing to help others and straightforward recruitment; (2) Barriers: A hesitancy to participate was due to technical and clinical research aspects, participation burden and cultural barriers, such as complex wording, time commitment and nonindigenous research and (3) Benefits: Children and parents experienced advantages such as the opportunity for education.ConclusionsParents reported positive experiences and described the unexpected benefit of increasing families'' health knowledge through participation. Improvements for current follow‐up studies were identified. Different ethnicities reported different experiences and perspectives, which warrants ongoing research, particularly with indigenous research participants.Patient or Public ContributionNo active partnership with parents of patients took place.     

Question prompt lists and endorsement of question‐asking support patients to get the information they seek—A longitudinal qualitative study

IntroductionQuestion prompt lists (QPLs) have been found to support patients to ask questions and improve the information they receive from doctors. However, some QPL tools, which have been available online for almost 15 years, have little published data on their impact in real‐world settings. This study''s aim was to understand patients'' attitudes and experiences accessing health information and to assess the impact of introducing two generic QPLs over 3 months.MethodsA longitudinal qualitative study consisting of three semi‐structured interviews over a three‐month period was conducted with 31 purposively selected participants, adults ≥18 years, recruited online and through social media. Participants were introduced to two different QPLs currently available online (‘Question Builder’; ‘AskShareKnow’). Inductive thematic analysis of a total of 92 semi‐structured telephone interviews was conducted during May–November 2020.ResultsThree main themes are described. (1) Participants described barriers and facilitators to accessing health information: navigating a complex health system; difficulty asking questions of their healthcare professionals and that they value doctors with good communication skills. (2) QPLs helped some participants recognize the role of question‐asking in consultations, made them feel more empowered and helped them prepare and prioritize. (3) Participants wanted QPLs to be easier to use, be accessible when needed and that question‐asking and QPLs should be normalized in medical consultations.ConclusionsWell‐designed and easily accessible QPLs can empower people to ask questions and be more involved in decisions about their health care. Endorsement of question‐asking in consultations by healthcare professionals and providing QPL tools at the point of contact with health services will be key to realizing the potential of QPLs.Patient or Public ContributionThis study was completed in conjunction with a reference group consisting of a consumer representative, representatives from the Australian Commission on Safety and Quality in Health Care, Healthdirect Australia Ltd., and the research team.     

Mapping the role of patient and public involvement during the different stages of healthcare innovation: A scoping review

BackgroundPatient and public involvement (PPI) has become increasingly important in the development, delivery and improvement of healthcare. PPI is used in healthcare innovation; yet, how it is used has been under‐reported. The aim of this scoping review is to identify and map the current available empirical evidence on the role of PPI during different stages of healthcare innovation.MethodsThe scoping review was conducted in accordance with PRISMAScR and included any study published in a peer‐reviewed journal between 2004 and 2021 that reported on PPI in healthcare innovation within any healthcare setting or context in any country. The following databases were searched: Medline, EMBASE, CINAHL, PsycInfo, HMIC and Google Scholar. We included any study type, including quantitative, qualitative and mixed‐method studies. We excluded theoretical frameworks, conceptual, scientific or grey literature as well as discussion and opinion papers.ResultsOf the 87 included studies, 81 (93%) focused on or were conducted by authors in developed countries. A wide range of conditions were considered, with more studies focusing on mental health (n = 18, 21%) and cancer care (n = 8, 9%). The vast majority of the studies focused on process and service innovations (n = 62, 71%). Seven studies focused on technological and clinical innovations (8%), while 12 looked at both technological and service innovations (14%). Only five studies examined systems innovation (5%) and one study looked across all types of innovations (1%). PPI is more common in the earlier stages of innovation, particularly problem identification and invention, in comparison to adoption and diffusion.ConclusionHealthcare innovation tends to be a lengthy process. Yet, our study highlights that PPI is more common across earlier stages of innovation and focuses mostly on service innovation. Stronger PPI in later stages could support the adoption and diffusion of innovation.Patient or Public ContributionOne of the coauthors of the paper (S. S.) is a service user with extensive experience in PPI research. S. S. supported the analysis and writing up of the paper.     

Evaluation of a community dental clinic providing care to people experiencing homelessness: A mixed methods approach

BackgroundPeople who experience homelessness have higher dental treatment needs compared to the general population. However, their utilization of dental services and levels of treatment completion are low. Peninsula Dental Social Enterprise, a not‐for‐profit organization in the United Kingdom, established a community dental clinic to improve access to dental care for this population.ObjectivesTo evaluate the impact and acceptability of the community dental service for patients and examine the barriers and enablers to using and providing the service.MethodsThe evaluation included a retrospective assessment of anonymous patient data and thematic analysis of semi‐structured interviews with patients, support staff and service providers. The interviews were thematically analysed. A cost analysis of the dental service was also conducted.ResultsBy 18 February 2020, 89 patients had attended the clinic. These included 62 males (70%) and 27 females (30%), aged 38.43 years on average (SD ± 11.07). Of these, 42 (47%) patients have completed their treatment, 23 (26%) are in active treatment and 24 (27%) left treatment. In total, 684 appointments (541.5 hours clinical time) were given. Of these, 82% (562) of appointments were attended (452.5 hours clinical time). The 22 interviews that were conducted identified flexibility, close collaboration with support services and health‐care team attitudes as key factors influencing service utilization and continuity of care.ConclusionsThis study provides details of a highly acceptable and accessible dental care model for people experiencing homelessness, with recommendations at research, practice and commissioning levels.     

Perceptions and behaviour of pregnant women in socioeconomic deprivation in rural areas. A qualitative study in France

BackgroundSocioeconomic deprivation (SED) is a risk factor for complications during pregnancy and childbirth, the impact of which has been studied poorly in rural areas.AimsTo explore the perceptions and behaviour of women living in SED in a rural area with regard to their pregnancy follow‐up.MethodsA qualitative study using semi‐structured individual interviews was carried out in a rural area in central France. To participate, the women had to have an Evaluation of Deprivation and Inequalities in Health Examination Centres deprivation score ≥ 30.17, be living in a rural area and have given birth during the month before the interview. The interviews were analysed using a thematic approach inspired by grounded theory.ResultsSeventeen women were interviewed. The difficulties of life in a rural area were linked to geographical remoteness, travel costs, lack of public services, inadequacy of nearby healthcare and social isolation. In all cases, pregnancy was an additional difficulty. The adaptive capability was related to the presence of an efficient family and social network. Most of the time, any increase in the limitations exceeded the ability to adapt and affected the medical follow‐up of the pregnancy, although follow‐up appointments were rarely abandoned altogether. Perceptions of birth preparation and parenting sessions were often limited to advice on pain management. Due to their affiliation with their rural area or their choice of lifestyle, the women complained only minimally.ConclusionWomen often minimize any limitations and implement adaptive techniques that make identification by social and medical services more difficult.Patient or Public ContributionEighteen women in SED were contacted by Childhood Medical Protection, midwives and general practitioners practising in rural areas. One woman declined participation and seventeen were interviewed.