Dataset Information

Patient involvement in rheumatology outpatient service design and delivery: a case study.

ABSTRACT:

Background

Patient involvement is increasingly recognized as important within the UK National Health Service to ensure that services delivered are relevant to users' needs. Organizations are encouraged to work with service users to achieve excellence in care. Patient education can improve health outcomes and reduce health-care costs. Mobile technologies could play a vital role in this.

Aim

Patient-centred development of innovative strategies to improve the experience of rheumatology outpatients.

Case study

The Group Rheumatology Initiative Involving Patients (GRIIP) project was set up in 2013 as a joint venture between patients, clinicians, academics and management at a London hospital. The project saw (i) the formation of an independent patient group which provided suggestions for service improvement - outcomes included clearer signs in the outpatient waiting area, extended phlebotomy opening hours and better access to podiatry; (ii) a rolling patient educational evening programme initiated in 2014 with topics chosen by patient experts - feedback has been positive and attendance continues to grow; and (iii) a mobile application (app) co-designed with patients launched in 2015 which provides relevant information for outpatient clinic attendees and data capture for clinicians - downloads have steadily increased as users adopt this new technology.

Conclusion

Patients can effectively contribute to service improvement provided they are supported, respected as equals, and the organization is willing to undergo a cultural change.

SUBMITTER: de Souza S

PROVIDER: S-EPMC5433532 | biostudies-literature | 2017 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Patient involvement in rheumatology outpatient service design and delivery: a case study.

de Souza Savia S Galloway James J Simpson Carol C Chura Radka R Dobson Joanne J Gullick Nicola J NJ Steer Sophia S Lempp Heidi H

Health expectations : an international journal of public participation in health care and health policy 20160627 3

<h4>Background</h4>Patient involvement is increasingly recognized as important within the UK National Health Service to ensure that services delivered are relevant to users' needs. Organizations are encouraged to work with service users to achieve excellence in care. Patient education can improve health outcomes and reduce health-care costs. Mobile technologies could play a vital role in this.<h4>Aim</h4>Patient-centred development of innovative strategies to improve the experience of rheumatolo ...[more]

PMID: 27345769

Similar Datasets

Project description:BackgroundRheuma Tolerance for Cure (RTCure) is a five-year international collaboration between academia, industry and patients/members of the public. It focuses on developing approaches to predict the onset of rheumatoid arthritis (RA) and designing clinical trials to reduce the risk of disease development through immune-tolerising and other treatments. We conducted a mid-term evaluation of patient and public involvement (PPI) within the project.MethodsTwo surveys on PPI were co-designed by the PPI Coordinator, Patient/Public Research Partners (PRPs) and a researcher. Both anonymous, electronic surveys were distributed to 61 researchers and 9 PRPs. Quantitative survey data were analysed using descriptive statistics and free text responses underwent inductive thematic analysis.ResultsResearcher and Patient response rates were 33% and 78%, respectively. Quantitative Researcher Survey data highlighted that (i) responding researchers represented all seven Work Packages (WPs), (ii) 40% thought PRPs had made a large or extremely large contribution to their own WPs, (iii) 55% thought PPI has had a moderate or large impact on RTCure, (iv) 75% worked with PRPs in RTCure, and (v) 60% said PRPs had affected their research thinking. Quantitative PRP Survey data highlighted that (i) PRPs were most involved in four WPs, (ii) 43% thought they had made a minor contribution to their main WP, (iii) 57% thought PPI has had a small impact on RTCure, and (iv) 57% thought they received too little feedback on the outcome of their contribution to different tasks. Four main themes were identified in both surveys: 'PRP contributions', 'Experiences of PPI', 'Impact of PPI on RTCure', and 'How PPI can be improved'. Two additional themes from the Researcher Survey were 'Impact of PPI on researchers' and 'Influence on Future Projects', and from the PRP Survey were 'Impact of PPI on PRPs' and 'Engagement with PRPs'.ConclusionPPI seemed to have a significant impact on RTCure, however, PRPs were less aware. A focus on improving communication between PRPs and researchers (facilitated by the PPI Coordinator), and providing PPI training for researchers is likely to improve involvement. Complex legal agreements for PRPs should be avoided and careful attention paid to appropriate PRP compensation.

Project description:BackgroundThe value of early integration of palliative care has been demonstrated increasingly for the past years in both oncological and nononcological diseases. Outpatient palliative care services might represent a feasible approach to implement supportive care in early disease. In this study, we aimed at evaluating which patients use and benefit from outpatient palliative care services, which symptoms are addressed most, and which support services are installed in this early phase of disease.MethodsWe retrospectively analyzed the entire patient collective of a recently developed palliative care outpatient clinic within the leading university hospital in Switzerland for a period of five years. Sociodemographics, symptoms, and information on disease as well as patient-reported outcomes were retrieved from the electronic patient files. Demographic and clinical data were analyzed by descriptive statistics between groups and survival was analyzed by means of Kaplan-Meier estimates and log-rank test.ResultsWe report on 642 consultations of 363 patients between 2016 and 2020. Patients had a mean of 1.8 visits (range 1-10), with n = 340 patients (93.7%) of patients suffering from an oncological disease. Overall symptom load was high, with n = 401 (73.7%) of patient-reported outcomes reporting two or more symptoms. Distress levels of 5 or higher were reported in n = 78 (30.4%) of available patient-reported outcomes. Independent of the origin of primary disease and the length of the disease trajectory, patients were referred to the palliative care service in median only four months before death.ConclusionWe identify high symptom load and distress in the outpatient palliative patient population. Patients benefitted from supportive medication, improvement of ambulatory support systems and advance care planning, and more than one-third of patients remained in follow-up, indicating a good acceptance of the service. Overcoming the overall late referral could, however, further increase the quality of life at earlier stages of disease.

Project description:BACKGROUND:The NHS Diabetes Prevention Programme (NHS-DPP) is a nine-month, group-based behavioural intervention for adults in England at risk of developing Type 2 diabetes. Four independent providers were commissioned to deliver versions of the NHS-DPP, in line with NHS England specifications. This observational study maps NHS-DPP delivery in routine practice against the NHS specification, and compares service delivery with observed patient experiences. METHODS:Researchers observed service delivery across eight complete NHS-DPP courses (118 sessions, median 14 sessions per course), consenting 455 participants (36 staff, 398 patients, 21 accompanying persons). Key features of NHS-DPP delivery were described using the Template for Intervention Description and Replication (TIDieR) framework. Researchers wrote detailed field notes during each session, including observations of patient experience. Field notes were content analysed; instances of positive and negative experiences were labelled and grouped into categories. Researchers used a novel method of comparing observed patient experiences to variations in programme delivery. RESULTS:Delivery broadly followed NHS England's specification and the plans set out by providers. Deviations included the scheduling and larger group sizes in some sessions. There was variation in the type and format of activities delivered by providers. Positive patient experiences included engagement, satisfaction with the programme, good within-group relationships and reported behavioural changes. Negative experiences included poor scheduling, large groups, and dissatisfaction with the venue. Where more interactive and visual activities were delivered in smaller groups of 10-15 people with good rapport, there were generally more instances of positive patient experiences, and where there were structural issues such as problems with the scheduling of sessions, poor venues and inadequate resources, there tended to be more negative patient experiences. CONCLUSIONS:Addressing issues that we have identified as being linked to negative experiences with the NHS-DPP could increase uptake, reduce patient drop-out and increase the overall effectiveness of the programme. In particular, modifying structural aspects of the NHS-DPP (e.g. reliable session scheduling, reducing group sizes, enough session resources) and increasing interaction appear particularly promising for improving these outcomes.

Project description:Older adults who live in rural areas experience significant disparities in health status and access to mental health care. "Telepsychology," (also referred to as "telepsychiatry," or "telemental health") represents a potential strategy towards addressing this longstanding problem. Older adults may benefit from telepsychology due to its: (1) utility to address existing problematic access to care for rural residents; (2) capacity to reduce stigma associated with traditional mental health care; and (3) utility to overcome significant age-related problems in ambulation and transportation. Moreover, preliminary evidence indicates that telepsychiatry programs are often less expensive for patients, and reduce travel time, travel costs, and time off from work. Thus, telepsychology may provide a cost-efficient solution to access-to-care problems in rural areas.We describe an ongoing four-year prospective, randomized clinical trial comparing the effectiveness of an empirically supported treatment for major depressive disorder, Behavioral Activation, delivered either via in-home videoconferencing technology ("Telepsychology") or traditional face-to-face services ("Same-Room"). Our hypothesis is that in-homeTelepsychology service delivery will be equally effective as the traditional mode (Same-Room). Two-hundred twenty-four (224) male and female elderly participants will be administered protocol-driven individual Behavioral Activation therapy for depression over an 8-week period; and subjects will be followed for 12-months to ascertain longer-term effects of the treatment on three outcomes domains: (1) clinical outcomes (symptom severity, social functioning); (2) process variables (patient satisfaction, treatment credibility, attendance, adherence, dropout); and (3) economic outcomes (cost and resource use).Results from the proposed study will provide important insight into whether telepsychology service delivery is as effective as the traditional mode of service delivery, defined in terms of clinical, process, and economic outcomes, for elderly patients with depression residing in rural areas without adequate access to mental health services.National Institutes of Health Clinical Trials Registry (ClinicalTrials.gov identifier# NCT00324701).

Dataset Information

Patient involvement in rheumatology outpatient service design and delivery: a case study.

Background

Aim

Case study

Conclusion

Publications

Patient involvement in rheumatology outpatient service design and delivery: a case study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets