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PubMed1997

Measuring outcomes in genitourinary medicine: involving service users in the measurement of outcomes.

Recently there has been increased emphasis on the user perspective in health care. At the same time the concern with effective health care is making us look more critically at the outcomes of treatment and other interventions, and the evidence available to us to make sense of effectiveness. This paper addresses the involvement of genitourinary medicine service users in outcome measurement through 3 linked questions: (1) What do we mean by outcomes? (2) What do we mean by users? and (3) What do we mean by involving?

Female Urogenital Diseases↗
PubMed1991

End-user participation in the needs assessment for a clinical information system.

The successful introduction of a new information system requires technological and behavioral changes. Intended users of the new system should participate in defining goals for the system, examining alternatives for achieving these goals, and selecting from these alternatives. Broad-based end-user involvement is especially useful during the needs assessment (goal definition) phase, both to identify the diverse expectations of the end-user community and to develop a sense of system ownership by these users. System planners can stimulate active end-user involvement by inviting each constituent user group (for example, each hospital department) to assume responsibility for specifying its objectives for the new system. The collection of all groups' objectives defines the organization's expectations of a new system, provides a means for comparing systems, and aids in predicting the overall acceptance of any proposed system. Each constituent group's list of objectives likewise provides a measure of anticipated acceptance for that group.

Computer User Training↗
PubMed2000

Involving service users in dementia care planning.

The evaluation of dementia services has been hindered by the difficulties of involving patients themselves. Current research emphasises the importance of good communication when attempting to elicit the views of those with dementia. Listening to and learning from people with dementia in everyday life will help nurses understand their fears, needs and wishes.

Aged↗
PubMed2002

TOXBASE: poisons information on the internet.

OBJECTIVES: To assess the uptake, usage and acceptability of TOXBASE, the National Poisons Information Service internet toxicology information service. METHODS: An observational study of database usage, and a questionnaire of users were undertaken involving users of TOXBASE within the UK between August 1999, when the internet site was launched, and May 2000. The main outcome measures were numbers of registered users, usage patterns on the database, responses to user satisfaction questionnaire. RESULTS: The number of registered users increased from 567 to 1500. There was a 68% increase in accident and emergency departments registered, a 159% increase in general practitioners, but a 324% increase in other hospital departments. Between January 2000 and the end of May there had been 60 281 accesses to the product database, the most frequent to the paracetamol entry (7291 accesses). Ecstasy was the seventh most frequent entry accessed. Altogether 165 of 330 questionnaires were returned. The majority came from accident and emergency departments, the major users of the system. Users were generally well (>95%) satisfied with ease and speed of access. A number of suggestions for improvements were put forward. CONCLUSIONS: TOXBASE has been extensively accessed since being placed on the internet (http://www.spib.axl.co.uk). The pattern of enquiries mirrors clinical presentation with poisoning. The system seems to be easily used. It is a model for future delivery of treatment guidelines at the point of patient care.

Databases, Factual↗
PubMed2001

What does receiving the care programme approach mean for service users?

OBJECTIVE: To explore what receiving the Care Programme Approach means for service users. DESIGN: A qualitative study based on peer group discussion, the transcript being subjected to issues analysis to generate key themes. SETTING: Ayrshire and Arran, West of Scotland. SUBJECTS: Six people with severe and enduring mental illness who were receiving the Care Programme Approach. The size of the group was restricted to allow service users time to express their views. (A representative response was not being sought.) RESULTS: Four major themes emerged from the service users: the power of user involvement, how receiving CPA can help to avert potential problems, the rights of service users, and the benefits of advocacy. These service users felt that CPA had made a real difference to their lives. CONCLUSION: As user involvement is an integral part of CPA, it is important that we develop strategies that allow their views to shape, in a genuine way, the services being put in place to meet their needs. In Ayrshire they seem to have learned that their participation mattered.

Female↗
PubMed2001

Patient information: involving the user group.

A review within an acute hospital trust identified problems with in-house information, including a lack of patient involvement, poor quality print and over-use of technical language. A project was set up to improve the quality of the trust's information leaflets.

Educational Status↗
PubMed2005

Involving older people in research: methodological issues.

The policy imperative to increase public participation in health and social care research, planning and service delivery raises significant questions about optimum approaches, methods and the extent to which this policy can influence change in practice. This paper highlights the key policy literature on user involvement and participatory research methods to establish the context for a partnership research project exploring perceptions of risk in relation to falls from the perspectives of older people, carers, and health and social care professionals. The paper reports the methods used in developing user involvement in the research at a number of levels, including project management, and a consumer panel working alongside the research team and influencing the dissemination in local falls prevention strategies. The authors draw out the issues related to the context and method of involvement, and discuss the impact on research quality and local service development in health and social care.

Accidental Falls↗
PubMed2006

Stakeholders' views on measuring outcomes for people with learning disabilities.

What works and how do we know? These are recurring questions for health and social care professionals, although mediated through differing philosophies and historical perspectives. The aims of the study reported here were to discover views of managers and commissioners of services for people with learning disabilities in Scotland regarding (a) current approaches to service evaluation (as an indication of what is to be measured) and (b) healthcare outcome measurement (as an indication of preferences regarding how this should be measured). A postal questionnaire was used to survey 94 stakeholders from the NHS, Local Authorities, and non-statutory organisations across Scotland. Respondents' views were sought on current approaches to service evaluation within learning disabilities; outcome measurement; appropriateness of specified methods of measuring health outcomes; desired future methods of outcome measurement within learning disabilities; and service user involvement in care. A 77% (73/94) response rate to the questionnaire was achieved. Different methods of service evaluation were used by different stakeholders. Staff appraisal was the most frequently identified method (used by 85% of respondents). Specific outcome measures were used by 32% of respondents although there were differences of opinion as to what constitutes specific outcome measures. Overall there was strong support for goal-setting and reviewing (83%) and individualised outcome measures (75%) as appropriate methods for use with people with learning disabilities. The hypothetical question asking what outcome measures should be introduced for this client group had by far the lowest response rate (51/73). The overwhelming majority of all respondents, 68 (92%), reported user involvement in their service. Staff ambivalence to outcome measurement was evident in the research and respondents highlighted the complexity and multidimensional nature of outcomes for this service user group. Managers recognised that outcome measurement was expected but were uncertain how to go about it.

Humans↗
PubMed2002

Research and development at the health and social care interface in primary care: a scoping exercise in one National Health Service region.

The present project aimed to identify research activity at the health and social care interface in primary care within one National Health Service region, and to determine levels of research capacity and support within social services. The study was commissioned by a primary care research network (PCRN) in order to assess opportunities to increase research capacity within social services. Data were collected in two phases from 61 managers, team leaders and senior practitioners in social care, and six public health representatives in health authorities, using telephone interviews and focus groups. The findings highlighted a lack of infrastructure and support for research and development in social care. However, many social care respondents wanted opportunities to develop research skills with healthcare colleagues. Despite poor support, many small-scale projects were described, and many respondents showed an enthusiasm for engaging with research. Methods in use included surveys, action research, needs analysis and evaluation of service developments. Many examples of user involvement were given. Interface projects were usually instigated by interagency forums and funded from multiple sources. Most project work was motivated by service improvement or development, rather than aiming to produce generalisable knowledge. Barriers to conducting research included lack of confidence, research skills and time, as well as workload demands, lack of cover to release staff for research and lack of supervision. Research was not seen as legitimate work in some social care environments or as part of a career path. Existing joint working initiatives (such as the National Service Frameworks) were highlighted as flashpoints for potential research and evaluation activity. The findings suggest clear opportunities for PCRNs to develop research capacity at the interface with social care; for example, by signposting available resources, providing training grants and secondments for social care staff, and supporting interagency networks with a focus on evaluation. In turn, experience in promoting user involvement in social services could add value to research expertise at the primary care-social care interface.

Cooperative Behavior↗
PubMed2004

Universal product design involving elderly users: a participatory design model.

Recent studies have shown that people prefer to age in their familiar environments, thus guiding designers to provide a safe and functionally appropriate environment for ageing people, regardless of their physical conditions or limitations. Therefore, a participatory design model is proposed where human beings can improve their quality of life by promoting independence, as well as safety, useability and attractiveness of the residence. Brainstorming, scenario building, unstructured interviews, sketching and videotaping are used as techniques in the participatory design sessions. Quality deployment matrices are employed to find the relationships between the elderly user's requirements and design specifications. A case study was devised to apply and test the conceptual model phase of the proposed model.

Activities of Daily Living↗
PubMed2002

Making health data maps: a case study of a community/university research collaboration.

This paper presents the main findings from a collaborative community/university research project in Canada. The goal of the project was to improve access to community health information, and in so doing, enhance our knowledge of the development of community health information resources and community/university collaboration. The project built on a rich history of community/university collaboration in Southeast Toronto (SETO), and employed an interdisciplinary applied research and action design. Specific project objectives were to: (1) develop via active community/university collaboration a geographic information system (GIS) for ready access to routinely collected health data, and to study logistical, conceptual and technical problems encountered during system development; and (2) to document and analyze issues that can emerge in the process of community/university research collaboration. System development involved iteration through community user assessment of need, development or refinement of the GIS, and assessment of the GIS by community users. Collaborative process assessment entailed analysis of archival material, interviews with investigators and participant observation. Over the course of the project, a system was successfully developed, and favorably assessed by users. System development problems fell into four main areas: maintaining user involvement in system development, understanding and integrating data, bringing disparate data sources together, and making use of assembled data. Major themes emerging from the community/university collaborative research process included separate community and university cultures, time as an important issue for all involved, and the impact of uncertainty and ambiguity on the collaborative process.

Access to Information↗
PubMed2006

Involving service users in interprofessional education narrowing the gap between theory and practice.

Calls for greater collaboration between professionals in health and social care have led to pressures to move toward interprofessional education (IPE) at both pre- and post-registration levels. Whilst this move has evolved out of "common sense" demands, such a multiple systems approach to education does not fit easily into existing traditional educational frameworks and there is, as yet, no proven theoretical framework to guide its development. A research study of an IPE intervention at the University of Liverpool in the UK drew on complexity theory to conceptualize the intervention and to evaluate its impact on a group of approximately 500 students studying physiotherapy, medicine, occupational therapy, nursing and social work. The intervention blended a multidisciplinary (non-interactive) plenary with self-directed e-learning and a series of interdisciplinary (interactive) workshops. Two evaluations took place: the first when the workshops were facilitated by trained practitioners; the second when the practitioners co-facilitated with trained service users. This paper reports findings from the second evaluation which focused on narrowing the gap between theory and practice. A multi-stakeholder evaluation was used including: students' reflective narratives, a focus group with practitioners and individual semi-structured interviews with service users. Findings showed that service users can make an important contribution to IPE for health and social care students in the early stages of their training. By exposure to a service user perspective, first year students can begin to learn and apply the principles of team work, to place the service user at the centre of the care process, to make connections between theory and "real life" experiences, and to narrow the gap between theory and practice. Findings also revealed benefits for facilitators and service users.

Clinical Competence↗
PubMed1999

Challenges for user-interface designers of telemedicine systems.

Problems associated with telemedicine systems include high telecommunications costs, lack of physician interest, and failure to build evaluation into the design process from the onset of the telemedicine project. An overview of the human-factors engineering approach to systems design and how it can be applied to the development of telemedicine systems is described. Design of an interface is based on an analysis of user capabilities, tasks, and work environment. Task analyses are performed to understand and document the interaction between a user's work activities and a system. Two characteristics of a human factors approach that are important for telemedicine are: (1) defining and measuring user performance, and (2) involving users in the design and testing of a system. Usability goals are operationally defined and tracked to quantify performance. Having users participate in the design, testing, and critique of a system also increases the likelihood that the system will be accepted and used after it is released.

Humans↗
PubMed2000

New approaches to sexual health services in a rural health board area: involving service users and primary care professionals.

Research was undertaken to inform the future development of sexual health services for the population of a rural health board. Three separate surveys were carried out: (i) users of local and regional genitourinary medicine (GUM) services, (ii) users of local family planning clinics, and (iii) all local general practitioners (GPs) and practice nurses-to obtain views on current sexual health services and the optimum future configuration of services. Respondents to the GUM survey (n=137) attended GUM service for a range of sexual health reasons; confidentiality was the most important factor affecting choice of service provider and almost half (44%) would have been happy to receive the service from their GP. Family planning clinic respondents (n=298) attended clinics for a range of reasons; confidentiality was the most important factor affecting choice of service provider and less than one-third (29%) would attend their GP for a similar service. Both GUM and family planning clinic survey respondents supported the development of clinics providing a broad range of sexual health services. Almost all (97%) GP respondents in the primary care professionals survey saw patients for sexual health-related consultations; over half (54%) treated sexually transmitted infections (STIs). Significant training needs in sexual health were identified for primary care professionals. New models for the provision of sexual health services are proposed for this health board area.

Adult↗
PubMed2005

Involving service users in sexual health service development.

OBJECTIVES: The study objectives were to document users' experience of family planning and genitourinary medicine clinics and young people's services working within the time constraints of rapid service development and maximising the utility of this data for service improvement. METHODS: A total of 93 users of family planning and genitourinary medicine services participated in one of 13 facilitated discussion groups. Some 61% of the sample were women, 64% were aged over 25 years and 47% were Black Caribbean or Black African. The clinic journey was drawn on a wall covered with paper and participants added their comments during the discussion. RESULTS: Users had similar concerns across the three service types. Users perceived some receptionists and clinicians as un-friendly and judgmental and described others providing a quality service often under difficult conditions. Reception was insufficiently confidential, waiting environments uncomfortable, waiting times long and more information was needed throughout service use. CONCLUSIONS: Those elements of sexual health services known to be a source of dissatisfaction among young people may also be a problem for older service users and are experienced across different types of sexual health service. This preliminary study demonstrates the feasibility and acceptability of focus group evaluations of sexual health services. This approach generates qualitative data from relatively large numbers of users within a time-scale consistent with service development.

Adolescent↗