Mapping the impact of patient and public involvement on health and social care research: a systematic review

Background

There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research.

Objective

To identify the impact of patient and public involvement on health and social care research.

Design

A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon‐Woods et al. (2005) checklist.

Inclusion criteria

All study types that reported the impact PPI had on the health and/or social care research study.

Main results

A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user‐focused research objectives, development of user‐relevant research questions, development of user‐friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer‐focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified.

Conclusion

This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade.     

Patient perceptions of patient‐centred care: empirical test of a theoretical model

Aim

Patient perception measures are gaining increasing interest among scholars and practitioners. The aim of this study was to empirically examine a conceptual model of patient‐centred care using patient perception survey data.

Background

Patient‐centred care is one of the Institute of Medicine''s objectives for improving health care in the 21st century. Patient interviews conducted by the Picker Institute/Commonwealth Fund in the 1980s resulted in a theoretical model and survey questions with dimensions and attributes patients defined as patient‐centered.

Method

The present study used survey data from patients with overnight visits at 142 U.S. hospitals.

Results

Regression analysis found significant support for the theoretical model. Perceptions of emotional support had the strongest relationship with overall care ratings. Coordination of care, and physical comfort were strongly related as well.

Conclusion

Understanding how patients experience their care can help improve understanding of what patients believe is patient‐centred, and of how care processes relate to important patient outcomes.     

The politics of patient‐centred care

Background

Despite widespread belief in the importance of patient‐centred care, it remains difficult to create a system in which all groups work together for the good of the patient. Part of the problem may be that the issue of patient‐centred care itself can be used to prosecute intergroup conflict.

Objective

This qualitative study of texts examined the presence and nature of intergroup language within the discourse on patient‐centred care.

Methods

A systematic SCOPUS and Google search identified 85 peer‐reviewed and grey literature reports that engaged with the concept of patient‐centred care. Discourse analysis, informed by the social identity approach, examined how writers defined and portrayed various groups.

Results

Managers, physicians and nurses all used the discourse of patient‐centred care to imply that their own group was patient centred while other group(s) were not. Patient organizations tended to downplay or even deny the role of managers and providers in promoting patient centredness, and some used the concept to advocate for controversial health policies. Intergroup themes were even more obvious in the rhetoric of political groups across the ideological spectrum. In contrast to accounts that juxtaposed in‐groups and out‐groups, those from reportedly patient‐centred organizations defined a ‘mosaic’ in‐group that encompassed managers, providers and patients.

Conclusion

The seemingly benign concept of patient‐centred care can easily become a weapon on an intergroup battlefield. Understanding this dimension may help organizations resolve the intergroup tensions that prevent collective achievement of a patient‐centred system.     

Assessments of the extent to which health‐care providers involve patients in decision making: a systematic review of studies using the OPTION instrument

Background

We have no clear overview of the extent to which health‐care providers involve patients in the decision‐making process during consultations. The Observing Patient Involvement in Decision Making instrument (OPTION) was designed to assess this.

Objective

To systematically review studies that used the OPTION instrument to observe the extent to which health‐care providers involve patients in decision making across a range of clinical contexts, including different health professions and lengths of consultation.

Search strategy

We conducted online literature searches in multiple databases (2001–12) and gathered further data through networking.

Inclusion criteria

(i) OPTION scores as reported outcomes and (ii) health‐care providers and patients as study participants. For analysis, we only included studies using the revised scale.

Data extraction

Extracted data included: (i) study and participant characteristics and (ii) OPTION outcomes (scores, statistical associations and reported psychometric results). We also assessed the quality of OPTION outcomes reporting.

Main results

We found 33 eligible studies, 29 of which used the revised scale. Overall, we found low levels of patient‐involving behaviours: in cases where no intervention was used to implement shared decision making (SDM), the mean OPTION score was 23 ± 14 (0–100 scale). When assessed, the variables most consistently associated with higher OPTION scores were interventions to implement SDM (n = 8/9) and duration of consultations (n = 8/15).

Conclusions

Whatever the clinical context, few health‐care providers consistently attempt to facilitate patient involvement, and even fewer adjust care to patient preferences. However, both SDM interventions and longer consultations could improve this.     

An empirical study of patient participation in guideline development: exploring the potential for articulating patient knowledge in evidence‐based epistemic settings

Background

Patient participation on both the individual and the collective level attracts broad attention from policy makers and researchers. Participation is expected to make decision making more democratic and increase the quality of decisions, but empirical evidence for this remains wanting.

Objective

To study why problems arise in participation practice and to think critically about the consequence for future participation practices. We contribute to this discussion by looking at patient participation in guideline development.

Methods

Dutch guidelines (n = 62) were analysed using an extended version of the AGREE instrument. In addition, semi‐structured interviews were conducted with actors involved in guideline development (n = 25).

Results

The guidelines analysed generally scored low on the item of patient participation. The interviews provided us with important information on why this is the case. Although some respondents point out the added value of participation, many report on difficulties in the participation practice. Patient experiences sit uncomfortably with the EBM structure of guideline development. Moreover, patients who develop epistemic credibility needed to participate in evidence‐based guideline development lose credibility as representatives for ‘true’ patients.

Discussion and conclusions

We conclude that other options may increase the quality of care for patients by paying attention to their (individual) experiences. It will mean that patients are not present at every decision‐making table in health care, which may produce a more elegant version of democratic patienthood; a version that neither produces tokenistic practices of direct participation nor that denies patients the chance to contribute to matters where this may be truly meaningful.     

Patient involvement in mental health care: culture,communication and caution

Background

Patient or service user involvement in mental health services (MHS) is a hallmark of the recovery approach.

Objective

In this viewpoint article, we review Tambuyzer et al. paper ‘Patient involvement in mental health care: One size does not fit all’ in order to express our opinion of their work. We also suggest specific actions that may enhance the implementation of patient involvement in MHS.

Discussion

We make three main points about Tambuyzer et al. model. First, the cultural dimension of patient involvement seems underemphasized in the model. Second, the model might be improved if the increasing role of communications technology in patient involvement is taken into consideration. Third, it is important to acknowledge that the process of patient involvement is not linear, and participation is not a homogeneous experience.

Conclusions

We suggest that the model be expanded and that further work be carried out on the implementation of patient involvement in MHS.     

Towards a stakeholders' consensus on patient payment policy: the views of health‐care consumers,providers, insurers and policy makers in six Central and Eastern European countries

Background

Although patient charges for health‐care services may contribute to a more sustainable health‐care financing, they often raise public opposition, which impedes their introduction. Thus, a consensus among the main stakeholders on the presence and role of patient charges should be worked out to assure their successful implementation.

Aim

To analyse the acceptability of formal patient charges for health‐care services in a basic package among different health‐care system stakeholders in six Central and Eastern European countries (Bulgaria, Hungary, Lithuania, Poland, Romania and Ukraine).

Methods

Qualitative data were collected in 2009 via focus group discussions and in‐depth interviews with health‐care consumers, providers, policy makers and insurers. The same participants were asked to fill in a self‐administrative questionnaire. Qualitative and quantitative data are analysed separately to outline similarities and differences in the opinions between the stakeholder groups and across countries.

Results

There is a rather weak consensus on patient charges in the countries. Health policy makers and insurers strongly advocate patient charges. Health‐care providers overall support charges but their financial profits from the system strongly affects their approval. Consumers are against paying for services, mostly due to poor quality and access to health‐care services and inability to pay.

Conclusions

To build consensus on patient charges, the payment policy should be responsive to consumers'' needs with regard to quality and equity. Transparency and accountability in the health‐care system should be improved to enhance public trust and acceptance of patient payments.     

‘No one wants to be the face of Herpes London’: a qualitative study of the challenges of engaging patients and the public in sexual and reproductive health and HIV/AIDS services

Objectives

To explore barriers, challenges and best practice within patient and public engagement (PPE) in sexual and reproductive health and HIV (SRHH) services in London.

Methods

Consultation exercise using qualitative interviews with 27 stakeholders including commissioners, managers, voluntary/community organizations (VCOs) clinicians and patients, analysed using Framework Analysis and Atlas.ti software.

Results

Participants recognized PPE''s importance, echoing recent political and NHS drives, and highlighted the need for meaningful, empowering PPE, including user‐designed methods, peer research and participatory approaches. Although challenging in SRHH and requiring training and support, PPE may help tackle stigma, and promote self‐management and patient‐centred‐care, including peer education and role modelling. Expertise may come from experienced VCOs. Themes in priority order were: organizational commitment (including lack of dedicated staff, time and money); motivating patients; changing NHS philosophy; informing patients/public; using public awareness/education campaigns; overcoming stigma; working with VCOs. ‘Reaching out’ to engage underrepresented groups in this sensitive area was emphasized through community outreach, incentivization and linking with existing organizations. Making engagement easy and addressing issues of public value were also important. Stigma was less hindering than anticipated, except for ethnic minorities. PPE was seen to improve patient satisfaction, increase service uptake and reduce inequalities, key priorities in SRHH, and identify innovative service delivery ideas.

Conclusions

PPE is crucial in creating a patient‐led NHS and responsible society. If organizations, including the NHS, commit to implementing meaningful PPE which actively targets those at risk of poor SRHH, services can be truly patient‐led and patients and communities empowered to tackle the stigma of SRHH.     

The involvement of gynaecological patients in the development of a clinical guideline for resumption of (work) activities in the Netherlands

Context

Most initiatives for patient involvement in guideline development have been carried out for chronic diseases. The involvement of patients with incidental and non‐threatening diseases is more complicated. Little knowledge is available on how these patient groups can successfully be involved in guideline development.

Objective

To assess the effectiveness of the involvement of gynaecological patients in the guideline development for resumption of (work) activities after surgery.

Design

At three different stages patients were involved in the process: (i) three focus group discussions (FGDs) were organized, (ii) patients were involved for the instruction video, and (iii) patients tested the patient version of the clinical guideline. To assess the effectiveness, an evaluation framework was used. The guideline development process was divided into two parallel trajectories in which patients and professionals were consulted separately. Patients were primarily consulted for the development of the patient version, although their input also influenced the recommendations for resumption of (work) activities after surgery. Professionals were mainly involved in the development of the recommendations of the clinical guideline.

Discussion and conclusions

The involvement of gynaecological patients in the guideline development for resumption of (work) activities after surgery was successful in many respects. Consultation of individual patients by means of FGDs and with regular feedback moments has been rather effective for a guideline development process related to an incidental, non‐threatening disease for which there is no patient organization. Patients'' input contributed to applicability of the clinical guideline in daily practice. Increased patient involvement could be achieved by integration of the two parallel trajectories with additional participatory activities, such as a dialogue meeting.     

Heart failure patients' descriptions of participation in structured home care

Background

To strengthen the patient''s position in health care, patient participation has been decreed in policy documents and legalizations. For patients suffering from heart failure, self‐care is an important part of disease management and participation is crucial to succeed with this.

Objective

To examine how heart failure patients receiving structured home care described participation in the care.

Design

Qualitative study.

Setting and participants

Thirteen men and six women, aged between 63 and 90 years, were interviewed. The informants received structured home care at four home care units in Sweden. The interviews were analysed using qualitative content analysis.

Results

Five categories with associated subcategories describing participation in care were identified: communication between patients and health‐care professionals (HCPs) including time and space for dialogue and exchange of care‐related information, accessibility to care through awareness of the plan for home visits or feasibility to initiate home visits, active involvement in care by engaging in self‐care and collaboration with HCPs, trustful relation with HCPs, with confidence in competence and individually adapted care, options for decision making, by making decisions or entrusting decisions.

Conclusions

Patient participation could be strengthened through structured home care. Participation was facilitated when there was a balance between the patient''s own preferences to influence care and the health‐care professional''s actions and values and the organization of care. Barriers to participation could depend on the health‐care organization, lack of continuity and confidence in HCPs.     

Health literacy–listening skill and patient questions following cancer prevention and screening discussions

Objective

Patient question‐asking is essential to shared decision making. We sought to describe patients'' questions when faced with cancer prevention and screening decisions, and to explore differences in question‐asking as a function of health literacy with respect to spoken information (health literacy–listening).

Methods

Four‐hundred and thirty‐three (433) adults listened to simulated physician–patient interactions discussing (i) prophylactic tamoxifen for breast cancer prevention, (ii) PSA testing for prostate cancer and (iii) colorectal cancer screening, and identified questions they would have. Health literacy–listening was assessed using the Cancer Message Literacy Test‐Listening (CMLT‐Listening). Two authors developed a coding scheme, which was applied to all questions. Analyses examined whether participants scoring above or below the median on the CMLT‐Listening asked a similar variety of questions.

Results

Questions were coded into six major function categories: risks/benefits, procedure details, personalizing information, additional information, decision making and credibility. Participants who scored higher on the CMLT‐Listening asked a greater variety of risks/benefits questions; those who scored lower asked a greater variety of questions seeking to personalize information. This difference persisted after adjusting for education.

Conclusion

Patients'' health literacy–listening is associated with distinctive patterns of question utilization following cancer screening and prevention counselling. Providers should not only be responsive to the question functions the patient favours, but also seek to ensure that the patient is exposed to the full range of information needed for shared decision making.     

What is the evidence base for public involvement in health‐care policy?: results of a systematic scoping review

Background

Public involvement in health‐care policy has been advocated as a means to enhance health system responsiveness, yet evidence for its impact has been difficult to ascertain.

Objectives

To review the peer‐reviewed empirical evidence on outcomes of public involvement in health‐care policy.

Methods

We systematically searched PsychINFO and PubMed from November 2000 to April 2010 for empirical studies that reported on original research only; studies in languages other than English, German or French were excluded. Data were extracted using a standardized evidence table with a priori determined headings.

Main results

Nineteen studies were identified as eligible for inclusion in our review. We found that sound empirical evidence of the outcomes of public involvement activities in health care remains underdeveloped. The concept and the indicators used to examine and determine outcomes remain poorly specified and inconsistent, as does the reporting of the evidence. There was some evidence for the developmental role of public involvement, such as enhancing awareness, understanding and competencies among lay participants. Evidence for instrumental benefits of public involvement initiatives was less well documented.

Conclusions

Despite the growing body of work on public involvement in health‐care policy, evidence of its impact remains scarce; thus, firm conclusions about involvement activities that are appropriate and effective for policy development are difficult to draw. However, focus on outcomes risks missing the normative argument that involving the public in the health‐care policy process may be seen to be of intrinsic value.     

Multidisciplinary diabetes team care: the experiences of young adults with Type 1 diabetes

Background

This research examined whether young adults with Type 1 diabetes engage with the multidisciplinary consultation process and if not, then why.

Methods

We designed a web‐based self‐reported survey, available online from February to May 2011, for Australian adults 18–35 years with Type 1 diabetes. Respondents were asked about which clinicians they consulted to assist with self‐management. To expand on the results of the survey, we interviewed 33 respondents.

Results

Survey: Respondents (n = 150) consulted with the following clinicians: endocrinologist and diabetes educators: 23.3%; endocrinologist only: 18.0%; endocrinologist, diabetes educators and dieticians: 14.6%; endocrinologist, diabetes educators, dietician and general practitioners (GP): 11.3%; endocrinologist and GP: 10.6%; GP only: 4.6%; all clinicians recommended to assist with self‐management: 1.3%; 2.7% did not consult any clinician. Interview: Participants (n = 33) reported eight key disincentives to consultation with multidisciplinary clinicians. These were time constraints; provision of conflicting advice; inaccessibility of health services; variation in service standards; cost constraints; failure of clinicians to refer to other clinicians; lack of opportunity to build a therapeutic relationship; and failure of clinicians to engage in shared decision making.

Conclusion

Our results indicate that high attrition rates of young adults with Type 1 diabetes from recommended diabetes health services is linked to the failure of those services to meet the needs and preferences of their patients. The identified needs and preferences included joint consultation with multi‐disciplinary team clinicians; flexible access to advice by email or telephone consultation; and shared decision making. Patient engagement in health‐service re‐design has implications for improved health‐service delivery and enhanced treatment outcomes.     

Cancer patient and clinician acceptability and feasibility of a supportive care screening and referral process

Background

Incorporating supportive care into routine cancer care is an increasing priority for the multi‐disciplinary team with growing evidence of its importance to patient‐centred care. How to design and deliver a process which is appropriate for patients, clinicians and health services in rural areas needs further investigation.

Objective

To (i) examine the patient and clinician acceptability and feasibility of incorporating a supportive care screening and referral process into routine cancer care in a rural setting, and (ii) explore any potential influences of patient variables on the acceptability of the process.

Methods

A total of 154 cancer patients and 36 cancer clinicians across two rural areas of Victoria, Australia participated. During treatment visits, patients and clinicians participated in a supportive care process involving screening, discussion of problems, and provision of information and referrals. Structured questionnaires with open and closed questions were used to measure patient and clinician acceptability and feasibility.

Results

Patients and clinicians found the supportive care process highly acceptable. Screening identified relevant patient problems (90%) and problems that may not have otherwise been identified (83%). The patient–clinician discussion helped patients realize help was available (87%) and enhanced clinician–patient rapport (72%). Patients received useful referrals to services (76%). Feasibility issues included timing of screening for newly diagnosed patients, privacy in discussing problems, clinician time and availability of referral options. No patient demographic or disease factors influenced acceptability or feasibility.

Conclusions

Patients and clinicians reported high acceptability for the supportive care process, although mechanisms for incorporating the process into health care need to be further developed.     

Patient participation in medication safety during an acute care admission

Background

Patient participation in medication management during hospitalization is thought to reduce medication errors and, following discharge, improve adherence and therapeutic use of medications. There is, however, limited understanding of how patients participate in their medication management while hospitalized.

Objective

To explore patient participation in the context of medication management during a hospital admission for a cardiac surgical intervention of patients with cardiovascular disease.

Design

Single institution, case study design. The unit of analysis was a cardiothoracic ward of a major metropolitan, tertiary referral hospital in Melbourne, Australia. Multiple methods of data collection were used including pre‐admission and pre‐discharge patient interviews (n = 98), naturalistic observations (n = 48) and focus group interviews (n = 2).

Results

All patients had changes made to their pre‐operative cardiovascular medications as a consequence of surgery. More patients were able to list and state the purpose and side‐effects of their cardiovascular medications at pre‐admission than prior to discharge from hospital. There was very little evidence that nurses used opportunities such as medication administration times to engage patients in medication management during hospital admission.

Discussion and Conclusions

Failure to engage patients in medication management and provide opportunities for patients to learn about changes to their medications has implications for the quality and safety of care patients receive in hospital and when managing their medications once discharged. To increase the opportunity for patients to participate in medication management, a fundamental shift in the way nurses currently provide care is required.     

Contextualizing the findings of a systematic review on patient and carer experiences of dementia diagnosis and treatment: a qualitative study

Background

Involving service users in the systematic review process is seen as increasingly important. As systematic reviews often include studies from diverse settings and covering a time span of several decades, involving service users in consideration of applicability to specific populations or settings might make reviews more useful to practitioners and policymakers.

Objectives

To test and contextualize the findings of a systematic review of qualitative studies looking at patient and carer experiences of diagnosis and treatment of dementia.

Methods

Results from the systematic review were discussed in focus groups and semi‐structured interviews with patient, public and professional participants in the South East of England. Analysis was guided by coding frameworks developed from the results of the systematic review.

Participants

We recruited 27 participants, including three people with dementia, 12 carers, six service providers and five older people without dementia.

Results

Findings from the focus groups and interviews were consistent with those from the systematic review and suggest that our review findings were applicable to the local setting. We found some evidence that access to information and diagnostic services had improved but, as in the systematic review, post‐diagnosis support was still often experienced as inadequate.

Conclusions

Focus groups and interviews with service users and their representatives can provide useful contextual information. However, such strategies can require considerable investment of the part of the researcher in terms of time and resources, and more work is needed to refine strategies and establish the benefits for patients and the organization of services.     

The role of patients and their relatives in ‘speaking up’ about their own safety – a qualitative study of acute illness

Background

Poor recognition of and response to acute illness in hospitalized patients continues to cause significant harm despite the implementation of safety strategies such as early warning scores. Patients and their relatives may be able to contribute to their own safety by speaking up about changes in condition, but little is known about the factors that influence this. This study examined the experiences and views of patients and their relatives to determine the potential for involvement in promoting their own safety.

Methods

This data set is drawn from a wider ethnographic study of the management of the acutely ill patient in hospital. Thirteen patients and seven relatives from two medical settings in two UK NHS Trusts were interviewed. Thematic analysis identified factors likely to influence patients'' and their relatives'' ability to contribute to the management of deterioration.

Results

All patients interviewed had experienced their acute illness within the context of a long‐term health problem. Speaking up was influenced by the ability to recognize changes in clinical condition, self‐monitoring, confidence and trust, and culture and system of health care. When patients or relatives did raise concerns, health‐care staff had a mediating effect on their comfort with and the effectiveness of speaking up.

Implications

Safety strategies based on patient involvement must take account of the complexities of acute illness. Those that promote partnership may be more acceptable to patients, their families and staff than those that promote challenging behaviour and may ultimately prove to be most safe and effective.     

Introducing the patient's perspective in hospital health technology assessment (HTA): the views of HTA producers,hospital managers and patients

Background

The recent establishment of health technology assessment (HTA) units in University hospitals in the Province of Quebec (Canada) provides a unique opportunity to foster increased participation of patients in decisions regarding health technologies and interventions at the local level. However, little is known about factors that influence whether the patient''s perspective is taken into consideration when such decisions are made.

Objective

To explore the practices, perceptions and views of the various HTA stakeholders concerning patient involvement in HTA at the local level.

Method

Data were collected using semi‐structured interviews with 24 HTA producers and hospital managers and two focus groups with a total of 13 patient representatives.

Results

Patient representatives generally showed considerable interest in being involved in HTA. Our findings support the hypothesis that the patient perspective contributes to a more accurate and contextualized assessment of health technologies and produces HTA reports that are more useful for decision makers. They also suggest that participation throughout the assessment process could empower patients and improve their knowledge. Barriers to patient involvement in HTA at the local level are also discussed as well as potential strategies to overcome them.

Discussion and conclusion

This study contributes to knowledge that could guide interventions in favour of patient participation in HTA activities at the local level. Experimenting with different patient involvement strategies and assessing their impact is needed to provide evidence that will inform future interventions of this kind.