The new NHS information strategy Information for Health was launched by the Secretary of State for Health on 24 September 1998. Information for patients and the public forms a key part of the strategy, which is set in the context of a new Information Age in which members of the public have electronic access to information and services 24 hours a day.
To assess the feasibility of implementing four patient decision aids (PtDAs) for early stage breast cancer treatment decisions into routine clinical care in community settings.
There is very limited information available about implementing decision aids into routine clinical practice and most of this information is based on academic centres; more information is needed about implementing them into routine clinical practice in community settings.
Structured individual interviews.
Providers from 12 sites, including nine community hospitals, a community oncology centre and two academic centres.
Usage data, barriers to and resources for implementing the PtDAs.
Nine of the 12 sites were using the PtDAs with patients. All of the sites were lending the PtDAs to patients, usually without a formal sign-out system. The keys to successful implementation included nurses' and social workers' interest in distributing the PtDAs and the success of the lending model. Barriers that limited or prevented sites from using the PtDA included a lack of physician support, a lack of an organized system for distributing the PtDAs and nurses' perceptions about patients' attitude towards participation in decision making.
It is feasible to implement PtDAs for early stage breast cancer into routine clinical care in community settings, even with few resources available.
There is interest in interventions that provide support for patients facing challenging decisions, such as the choice between mastectomy and breast conservation surgery for breast cancer. However, it is difficult to implement these interventions. One potential source of resistance is the attitudes of clinicians.
To examine specialist breast clinicians' opinions about the provision of decision support interventions (DesIs) for patients.
As part of the development of a web-based DesI (BresDex), semi-structured interviews were conducted with specialist clinicians [breast surgeons, breast care nurses (BCNs) and oncologists] from four breast units in a UK region, and speciality national opinion leaders. Interviews were recorded, transcribed and analysed using the Framework approach.
A majority of the 24 clinicians interviewed did not have a working knowledge of DesIs and were ambivalent or sceptical. Many expressed conflicting opinions: they noted the potential benefits, but at the same time expressed reservations about information overlap, overload and about content that they considered inappropriate. Many wanted access to DesIs to be always under clinical supervision. In particular, they were uncertain as regards how DeSIs could be tailored to individual patients' needs and also accommodate clinical practice variation. BCNs were particularly concerned that DesIs might induce patient anxiety and replace their role.
The concept of providing interventions to support patients in decision-making tasks generated concern, defensiveness and scepticism. These attitudes will be a significant barrier. Implementation efforts will need to recognize and address these issues if these interventions are to become embedded in clinical practice.
A number of expert reports have pointed to serious problems with health care in many Latin American countries and argued the need to reform and improve health-care systems. In addition, the Ministers of Health of the Americas have stated that health systems should be accountable to citizens.
This paper examines, in each of 17 Latin American countries, public dissatisfaction with the health care to which people have access, the proportion of people reporting problems with access to and the cost of health care and the factors that are most important in driving public dissatisfaction.
Data are drawn from a 2007 Latinobarómetro survey of 19 212 adults interviewed face-to-face in 17 Latin American countries.
The proportion of people expressing dissatisfaction with their health care varies a great deal by country, as do the proportions reporting problems with access to and the cost of health care. Problems with access to care seem to matter most in trying to explain public dissatisfaction with their health care. More traditional measures of health outcomes and resources seem to matter less as drivers of dissatisfaction.
For governments trying to improve their citizens' satisfaction with the health care they receive, the highest priority would be improving people's basic access to health-care services. Also, it appears that democratic governments are seen as being more responsive to the public's needs in health care.
Objectives: To assess whether preferences for patients with angina changed at 18-month follow-up using the Patient Preferences Questionnaire for Angina treatment (PPQA).
Background: Evidence suggests that patients want information about treatment options. Reliable measurement of patient preferences for treatment is important for empowering patients.
Design: Postal self-administered questionnaire survey at baseline and follow-up. The preference questionnaire comprised 18 items about the main treatments for angina: medication, angioplasty and coronary artery bypass grafting (CABG).
Setting and participants: Patients with diagnosed angina from seven participating general practices across England. The sample comprised 222 patients with angina who responded to both baseline and follow-up treatment preference questionnaires.
Results: Most patients’ condition and preferences scores for treatment remained stable over 18 months. An exception was angioplasty preference scores, which indicated more negative attitudes towards this procedure over time. People aged over 75 years least preferred angioplasty. There were no associations between any changes in condition and changes in preferences. However, within-subject agreement could vary by ±5 to 7 points between baseline and follow-up, with stability apparently worst for the medication and best for surgery sub-scales, raising the question of what represents reasonable stability.
Conclusion: These results suggest preferences are relatively stable, even where there are changes in health, and provide further evidence of the utility (in particular, reliability) of the PPQA. However, this stability in scores did mask some movement in scale scores and in patients’ first-ranked treatment choices, showing changing preferences largely from angioplasty to CABG and vice versa, indicating the complexity of preferences
To systematically review feedback from pharmacy users on their perceptions and experiences of health-related advice and services provided from community pharmacies.
The focus of the review was community pharmacy activities in relation to promoting health and well-being, preventing ill-health and maintaining health. Searches were conducted for peer-reviewed (international) and non-peer-reviewed (UK) research. Electronic databases searched included MEDLINE, EMBASE, Cochrane Library and International Pharmaceutical Abstracts; hand searches of key journals and conference abstracts, key informants. Key informants in the UK were contacted to identify unpublished studies. The inclusion period was 1990 onwards. Data extraction and synthesis Data were abstracted into a matrix by one author with a sample checked by a second. The Health Development Agency's Evidence Base 2000 standards and the evidence categories used by the Department of Health in the National Service Frameworks were applied to each item.
Seven peer reviewed papers and 13 non-peer reviewed reports were identified for inclusion in the review. Consumer usage of pharmacies is almost universal with prescription supplies and purchase of over the counter medicines predominating. Evidence shows that not only is usage low for general health advice, but that pharmacists are perceived as 'drugs experts' rather than experts on health and illness. Emergency hormonal contraception and head lice management schemes have been well received. There is a need to consider privacy and confidentiality surrounding advice giving.
Users of community pharmacy-based health development initiatives express a high level of satisfaction. If community pharmacies are to be used to their full extent, then actions to extending the public's awareness and acceptance of the pharmacist's role in giving advice will be crucial. Further research will be needed to measure any change in premises development on the public's perception of the level of privacy in pharmacies.
To characterise the literature on public involvement in health research published between 1995 and 2009.
Papers were identified from three systematic reviews, one narrative review and two bibliographies. The analysis identified journals where papers were published; countries of lead authors; types of public involved; health topic areas; and stages of research involving the public. Papers were also classified as to whether they were literature reviews or empirical studies; focused on participatory/action research; were qualitative, quantitative or mixed-method. The number of papers published per year was also examined.
Of the 683 papers identified, 297 were of USA origin and 223 were of UK origin. Of the 417 empirical papers: (i) participatory/action research approach was dominant, together with qualitative data collection methods; (ii) the stage of research the public was most involved was question identification; (iii) indigenous groups were most commonly involved; (iv) mental health was the most common health topic. Published studies peaked in 2006.
The present study identifies publication patterns in public involvement in health research and provides evidence to suggest that researchers increasingly are 'walking the walk' with respect to public involvement, with empirical studies consistently out-numbering literature reviews from 1998.
Objective To identify self-reported reasons why adults with chronic disease do not fill a new prescription (medication non-fulfillment) and/or stop taking a medication without their physician telling them to do so (lack of medication persistence).
Methods Participants were sampled in 2008 from a national, internet-based panel of American adults with chronic disease. A total of 19 830 respondents answered questions about medication non-fulfillment and medication non-persistence and reasons for non-fulfillment and non-persistence. Among persons self-identified as non-fulfillers and non-persisters, statistical analyses assessed the association between reported reasons for non-fulfillment and non-persistence and chronic disease. A subsample of respondents completed an additional survey which included multi-item scales assessing matched constructs of most of the reasons for non-fulfillment and non-persistence. The convergent validity of the self-reported reasons was assessed against the multi-item scales.
Results The same four reasons were most commonly reported for both medication non-fulfillment and medication non-persistence: paying for the medication a financial hardship (56 and 43%, respectively); fear or experience of side effects (46 and 35%, respectively); generic concerns about medications (32 and 23%, respectively); and lack of perceived need for the medication (25 and 23%, respectively). The frequency with which the reasons were reported varied somewhat by chronic disease. The convergent validity of most of the self-reported reasons was confirmed against multi-item scales measuring matched constructs.
Conclusions The same top reasons for medication non-fulfillment and non-adherence were observed in a large internet-based sample of American adults with chronic disease. Future efforts to improve medication adherence should address patients’ medication concerns, perceived need for medications, and perceived medication affordability.
Patient and public involvement has been at the heart of UK health policy for more than two decades. This commitment to putting patients at the heart of the British National Health Service (NHS) has become a central principle helping to ensure equity, patient safety and effectiveness in the health system. The recent Health and Social Care Act 2012 is the most significant reform of the NHS since its foundation in 1948. More radically, this legislation undermines the principle of patient and public involvement, public accountability and returns the power for prioritisation of health services to an unaccountable medical elite. This legislation marks a sea-change in the approach to patient and public involvement in the UK and signals a shift in the commitment of the UK government to patient-centred care.
Joseph Heller's Catch-22 is regularly invoked to critique the irrationality inherent in supposedly rational bureaucracy. We explore a Catch-22 for policy concerning public involvement in English health care: you have to be ordinary to represent the community effectively, but, if you are ordinary, you cannot effectively represent your community.
The nature of public participation groups:
Starting with community health councils, we trace government policy about involving local people in health care, up to the current arrangements for local involvement networks and show how the above Catch-22 works. We do this in two principal ways. First, by an analysis of some of the unrecognized paradoxes in current government policies designed to populate health-care participation groups and second, by providing a series of narrative vignettes, drawn from our own experiences of working in such groups, which illustrate the nature of the dilemmas members face.
Our proposal to get out of the worst of the Catch-22 for effective public involvement groups is (paradoxically) to suggest focusing less on effectiveness, or more precisely, focusing less on those conventional, managerially defined notions of effectiveness that are now pretty much taken for granted within public services. This is because, if bodies like LINks are to do more than provide unthreatening, homogenous and tokenistic public perspectives, they need to be given space and time to pursue their own agendas.
To review and discuss issues related to participatory research, as they apply within the arena of cancer control.
A participatory research study with breast cancer self-help groups is referred to for description and discussion purposes. That study employed primarily individual and group interviews to assess benefits and limitations of self-help groups.
Four breast cancer self-help groups in Ontario communities provided the core involvement in the participatory research project.
The values and practices of mainstream academic research often conflict with those of research emphasizing participation and control of communities under study, leading to a variety of challenges for the latter approaches. Practical constraints faced by many community groups have important implications for participatory research approaches.
A balance needs to be found for participatory research within cancer control – one that ensures that the core aims of participatory research are maintained, while simultaneously acknowledging the various challenges that make a fully participatory project unrealistic. Steps can be taken to achieve a workable balance.
Background Patients tend to assign higher utilities to health states compared with the general public. Several explanations have been given for this difference including focusing illusion -, caused in part by the sparseness of a health state description such as the EQ-5D -, and adaptation.
Objective We investigated whether patients and the public differ in which dimensions they find important. Furthermore, we compared whether the dimensions named by patients and the public obtained higher rankings of importance compared with the predefined EQ-5D dimensions. Within each nominated dimension we investigated whether the public used a more negative frame compared with patients. In addition, adaptation was investigated by comparing patients with high levels of adaptation and patients with low levels of adaptation.
Design Data were collected using semistructured interviews among 124 patients with rheumatoid arthritis and 64 members of the public. Participants indicated which aspects are important to them when they think about their life having rheumatoid arthritis and rated the importance of these aspects and of the EQ-5D dimensions.
Results In contrast to patients, the public named more often aspects related to sports and mobility, leisure activities and work and framed these aspects negatively. Compared with self-rated dimensions, the public ranked the EQ-5D dimensions as more important whereas patients found both groups of aspects equally important. Patients who showed higher levels of adaptation did not differ significantly from patients with lower levels.
Conclusion The public is focused on life domains that are negatively influenced by the described health state whereas patients are focused on both the positive and negative aspects of their lives.
It is good practice for the public to be involved in developing research ideas into grant applications. Some positive accounts of this process have been published, but little is known about when their reactions are negative and when researchers' ideas are abandoned.
To present a case study account of when an academic-led idea for funding was not supported by stroke survivors and carers who were asked to contribute to its development, together with a reflection on the implications of the case from all the stakeholders involved.
A reflective case study of a research idea, developed by an academic researcher, on which stakeholders were consulted.
University researchers, clinicians, public involvement managers, and stroke survivors and carers from the NIHR's Stroke Research Network.
Although the idea met with the approval of health professionals, who were keen to develop it into a funding bid, the stroke survivors and carers did not think the idea worth pursuing. This lack of patient and carer support led to the idea being abandoned. Reflecting on this, those involved in the consultation believed that the savings accrued from abandoning the idea, in terms of ensuring that public money is not wasted, should be seen as an important benefit of public involvement in the research process.
Little is known about the role of the public in the abandonment of research ideas. We recommend that further research is undertaken into this important contribution that patients and the public can make to health research.
Knowledge of disability is considered key information to enable informed antenatal screening decisions by expectant parents. However, little is known about the role of experiential knowledge of disability in decisions to terminate or continue with a pregnancy diagnosed with a fetal abnormality.
To explore the role that expectant parents' experiential knowledge of disabilities and conditions can play in real-life decisions to continue or end a pregnancy with a fetal abnormality.
Secondary analysis of qualitative narrative interview data informed by contextual systems framework.
Participants were recruited throughout the United Kingdom and interviewed between 2004 and 2006.
Twenty-four women and four of their male partners who had direct or indirect experience of disability or illness and who had proceeded with or ended a pregnancy diagnosed with a fetal abnormality.
Most respondents recounted using their experiential knowledge of disability, whether of their unborn baby's condition or of a different condition, to try to imagine the future for their unborn child, themselves and their family when making their decision. Some, who were considering continuing their pregnancy and had little or no experience of their unborn baby's specific disability, sought out others' experiences of the condition following antenatal diagnosis.The nature of a parent's experiential knowledge did not predict whether they continued with or terminated their pregnancy.
Prospective parents may find it helpful to discuss their existing knowledge of their unborn baby's condition with health professionals who are aware of the influence this might have on parents' decisions.
The aim of this study was to explore the acceptability of antenatal enquiry for domestic abuse from the perspective of women using maternity services. It also sought to understand the experiences of referral and support offered to women who had positively disclosed abuse.MethodsA multimethod approach was adopted including quantitative and qualitative elements. The survey assessed women's views of the acceptability and impact of routine enquiry for domestic abuse. Interviews aimed, to understand the views and experiences of women who had positively disclosed abuse during their contact with maternity services.Results94.4% of those surveyed felt comfortable with a midwife asking about abuse. 96.6% of the participants also believed it was appropriate for a midwife to ask and that midwives should be able to respond to positive disclosure. Interviewees subject to abuse during pregnancy were happy to be questioned, even though they did not always feel able to disclose immediately.Conclusion
Women had a positive view of antenatal enquiry for domestic abuse in healthcare settings and support its continuation. Women expect to be asked and that midwives can respond appropriately. Raising the issue creates a culture in which women are made aware of the impact of abuse and understand there are avenues of support even if she decides not to leave the relationship. Women may choose not to disclose about the abuse at the initial time of asking, for fear of their own safety but asking signifies that she can disclose about at a later contact.
The publicly financed health service in Sweden has come under increasing pressure, forcing policy makers to consider restrictions.
To describe different perceptions of rationing, in particular, what citizens themselves believe influences their acceptance of having to stand aside for others in a public health service.
Qualitative interviews, analysed by phenomenography, describing perceptions by different categories.
Setting and participants:
Purposeful sample of 14 Swedish citizens, based on demographic criteria and attitudes towards allocation in health care.
Participants expressed high awareness of limitations in public resources and the necessity of rationing. Acceptance of rationing could increase or decrease, depending on one's (i) awareness that healthcare resources are limited, (ii) endorsement of universal health care, (iii) knowledge and acceptance of the principles guiding rationing and (iv) knowledge about alternatives to public health services.
This study suggests that decision makers should be more explicit in describing the dilemma of resource limitations in a publicly funded healthcare system. Openness enables citizens to gain the insight to make informed decisions, i.e. to use public services or to 'opt out' of the public sector solution if they consider rationing decisions unacceptable.
Nurses are becoming increasingly important as providers of primary health care in Australia. In November 2010, Medicare provider rights and Pharmaceutical Benefits Scheme rights for nurse practitioners, working in private practice and in collaboration with a medical practitioner, were introduced in Australia. Although international evidence suggests that nurse practitioners would be appropriate and acceptable providers of care at the first point of contact, such as primary health care, there is little Australian evidence about what care consumers are willing to accept from nurse practitioners.
To ascertain what care Australian health-care consumers would accept from nurse practitioners in this setting.
Australian adults over 18 years of age.
National Survey delivered online. Information about the survey was disseminated through a media campaign, stakeholder engagement and through the health-care consumer networks nationally.
The total number of respondents that started the survey was n = 1883. Ninety-five percentage (n = 1784) of respondents completed the survey. The majority of respondents were women, aged 25-54 years, had completed tertiary education and had an annual household income of more than A$80,000. The majority of the respondents (n = 1562, 87%) said they would be prepared to see a nurse practitioner for some of their primary health-care needs.
The findings of this study suggest consumers are accepting of a range of activities undertaken by nurse practitioners in primary health care and this has relevance for primary health-care workforce mix and organization, particularly for areas that are underserved by medical practitioners.
Background Patients are offered implantable defibrillators (ICDs) for the prevention of sudden cardiac death (SCD). However, patients’ decision-making process (DMP) of whether or not to accept an ICD has not been explored. We asked patients about their decision making when offered an ICD.
Design/Setting A grounded theory methodology was employed. Patients were recruited from three ICD centres. Those who received an ICD underwent interviews the first month after implant. Declining patients had interviews at their convenience. In-depth analysis of transcripts was completed. Identified themes were placed along process pathways in a DMP model and tested.
Findings Forty-four patients consented to participate (25% women). Thirty-four accepted an ICD and 10 (23%) declined. Ages ranged from 26 to 87 (mean = 65; SD = 12.5). Participants were retired (65%), had ischaemic heart disease (64%) and some post-secondary education (52%). The DMP was triggered when patient’s risk for SCD was communicated. The physician’s recommendation and a new awareness SCD risk were motivators to accept the ICD. Patient’s decision-making approaches fell along a continuum, from active and engaged to passive and indifferent. Patient’s approaches were influenced most by the following: (i) trust; (ii) social influences and (iii) health state.
Conclusions Health-care providers need to recognize the DMP pathways in which ICD candidacy and SCD risk are understood. The factors that influence a patient’s decision warrant discussion pre-implant. It is imperative that patients comprehend the meaning of ICD candidacy to make an informed decision. Participants did not recall alternatives to receiving ICD therapy.
To investigate whether the willingness of the general population to undergo a screening test of questionable effectiveness for pancreatic cancer is influenced by the quality and the extent of the information provided.
Representative sample (N=1000) of the general population aged over 20.
Participants were randomly allocated into two groups (N=500 each), with one group to receive basic and the other extended quality of information. The information was presented in two hypothetical scenarios about implicit and explicit benefits and adverse events of the screening test. Response rates were, respectively, 80.2% (N=401) and 93.2% (N=466).
Stated willingness to undergo the screening test.
Out of the 401 participants receiving the basic information scenario, 241 (60%) stated their willingness to accept the test, as compared to the 63/466 (13.5%) exposed to the extended one (P < 0.001). After adjusting for respondent characteristics through a logistic regression model, the ‘information effect’, expressed in terms of odds-ratio (OR), shows that provision of additional information was related to a 91% (OR 0.09; 95CI: 0.07 – 0.13) relative reduction in the likelihood of accepting the screening test.
The quality and the extent of the information provided about the implicit and explicit benefits and adverse events on hypothetical scenarios of a screening test may dramatically change the willingness of people to participate in the testing. This study suggests that provision of full information on the yield of health care interventions plays an important role in protecting the public from being exposed to procedures of questionable effectiveness.
Patients nearing the end of their lives face an array of difficult decisions.
This study was designed to assess the feasibility and acceptability of a decision aid (DA) designed for patients facing advanced or terminal illness.
We conducted a pilot randomized clinical trial of Health Dialog's Looking Ahead: choices for medical care when you're seriously ill DA (booklet and DVD) applied to patients on a hospital-based palliative care (PC) service.
University of Colorado Hospital - December 2009 and May 2010.
All adult, English-speaking patients or their decision makers were potentially eligible. Patients were not approached if they were in isolation, did not speak English or if any provider felt that they were not appropriate because of issues such as family conflict or actively dying.
All participants received a standard PC consultation. Participants in the intervention arm also received a copy of the DA. Measurements Primary outcomes included decision conflict and knowledge. Participants in the intervention arm also completed an acceptability questionnaire and qualitative exit interviews.
Of the 239 patients or decision makers, 51(21%) enrolled in the trial. The DA had no significant effect on decision conflict or knowledge. Exit interviews indicated it was acceptable and empowering, although they wished they had access to the DA earlier.
While the DA was acceptable, feasibility was limited by late-life illness challenges. Future trials of this DA should be performed on patients earlier in their illness trajectory and should include additional outcome measures such as self-efficacy and confidence.
The purpose of this study was to assess and compare the proportion of usable responses and protest votes obtained with two willingness to pay (WTP) techniques, contingent valuation (CV) and discrete choice experiment (DCE) and to assess the acceptability of the techniques to respondents.
Pregnant women attending the public antenatal clinics of a Sydney teaching hospital were surveyed.
Preference for either Treatment A (artificial rupture of the membranes followed by intravenous oxytocin) or Treatment B (prostaglandin E2 gel followed by oxytocin if necessary) was assessed. Then WTP for the preferred treatments was assessed using CV and WTP for specific attributes of the treatments in the DCE. In addition, the acceptability of the two techniques was compared in terms of responses deemed to be valid according to defined criteria, protest votes and comments recorded by consumers.
With the CV, 74% of respondents chose gel and their maximum WTP was Aus$178 compared with $133 for the alternative. A total of 68% of responses were deemed to be valid including 5% who may have been expressing a protest vote. With the DCE, respondents were WTP $55 for every 1 h reduction in the length of time from induction to delivery. A total of 72% of responses were deemed valid and only two of these 258 women were considered to have expressed a protest vote.
Only a small number of women expressed objections to the use of WTP questions in health-care and the majority of women completed both questions successfully.
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.MethodsA 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.ResultsPatients 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.
The National Infarct Angioplasty Project assessed the feasibility of establishing a comprehensive primary angioplasty service. We aimed to compare satisfaction at intervention hospitals offering angioplasty-based care and control hospitals offering thrombolysis-based care. Design: Mixed methods, with postal survey of patients and their carers, supported by semi-structured interviews.
Survey of 682 patients and 486 carers, and interviews with 33 patients and carers, in eight English hospitals.
Primary angioplasty or thrombolysis.
Satisfaction with treatment.
Responses were received from 595/682 patients (87%) and 418/486 carers (86%). Satisfaction with overall care was high at both intervention and control sites (78% vs. 71% patients rated their care as 'excellent', P = 0.074). Patient satisfaction was higher at intervention sites for some aspects of care such as speed of treatment (80% vs. 67%'excellent', P = 0.001). Convenience of visiting was rated lower at intervention sites by carers (12% vs. 1%'poor', P = 0.001). During interviews, carers reported that they accepted the added inconvenience of visiting primary angioplasty sites in the context of this life-saving treatment. Patient satisfaction with discharge and aftercare was lower in both treatment groups than for other aspects of care.
Reorganization of care to offer a primary angioplasty service was acceptable to patients and their carers. Satisfaction levels were high regardless of the type of care received, with the exception of discharge and aftercare.
As the use of electronic medical records (EMRs) spreads, health-care organizations are increasingly offering patients online access to their medical records. Studies evaluating patient attitudes towards viewing elements of their records through secure, electronic patient portals have generally not included medically underserved patients or those with HIV/AIDS. The goal of this study was to gain insight into such patients' attitudes towards online access to their medical records, including their doctors' visit notes.
Qualitative study of four focus groups with adult patients in general adult medicine and HIV clinics at a large county hospital. Transcripts were analysed for themes using an immersion/crystallization approach.
Patients' baseline understanding of the health record was limited. Perceived benefits of online access were improved patient understanding of health and disease, convenience, empowerment and a stronger relationship with their provider. Concerns included threats to privacy, worries about being unable to understand their record, fear that the computer would replace direct provider contact and hesitancy about potential demands on a provider's time. Patients also recommended providing online visit reminders, links to credible health information and assistance for paying bills.
Despite their initial lack of knowledge of the health record, focus group participants were overwhelmingly positive about the prospect of online access to medical records. However, they worried about potential loss of privacy and interference with the patient-provider relationship. As EMRs increasingly offer patients open access to their medical records, vulnerable patient groups will likely join others in desiring and adopting such change, but may need targeted support during times of transition.
Implementing preventive health care for young children provides the best chance of improving health and changing a child's life course. In Australia, despite government support for preventive health care, uptake of preventive services for young children is low. Using Andersen's behavioural model of health-care utilization, we aimed to understand how parents conceptualized their children's preventive health care and how this impacted on access to preventive health-care services.
Semi-structured telephone interviews conducted between May and July 2011.
Twenty-eight parents of children aged 3-5 years from three diverse socio-economic areas of Melbourne, Australia.
Thematic analysis showed parents' access to child preventive health care was determined by birth order of their child, cultural health beliefs, personal health practices, relationship with the health provider and the costs associated with health services. Parents with more than one child placed their own experience ahead of professional expertise, and their younger children were less likely to complete routine preventive health checks. Concerns around developmental delays required validation through family, friends and childcare organizations before presentation to health services.
To improve child preventive health requires increased flexibility of services, strengthening of inter-professional relationships and enhancement of parents' knowledge about the importance of preventive health in early childhood. Policies that encourage continuity of care and remove point of service costs will further reduce barriers to preventive care for young children. Recent reforms in Australia's primary health care and the expansion of child preventive health checks into general practice present a timely opportunity for this to occur.
Sensationalized reporting styles and a distorted framing of health-care issues in newspapers may trigger inappropriate commissioning decisions. We evaluated UK press coverage of pre-licensing access to trastuzumab (Herceptin) for early breast cancer as a case study.
Content analysis of newspaper articles published between April 2005 and May 2006 were coded by two researchers for interest groups represented, claims made and sensationalized reporting. Disagreements in coding were resolved by a third researcher. One thousand and ninety published articles were identified in the study period and a 20% sample (n = 218) was included in the content analysis. Most articles (76%, 95% CI 71-82) included claims about the clinical benefits of trastuzumab, and this was significantly higher than those expressing the uncertainty surrounding such benefits (6%, 95% CI 3-9) or those that discussed the potential harms (5%, 95% CI 2-8). Articles were significantly more likely to feature claims made by a breast cancer survivor or family member than any other interest group (P < 0.0001). Almost half of the articles carried some message to the effect that trastuzumab would make the difference between life and death (47%, 95% CI 40-53). Over a quarter (28%, 95% CI 22-34) suggested that trastuzumab is a 'miracle drug' or similar.
The benefits of drugs are highlighted, frequently using sensationalist language, without equal consideration of uncertainty or risks. Health-care purchasers should express decisions in opportunity cost terms; journalists should give fairer coverage to such arguments.
To explore the expectations of patients and parents of children with asthma regarding access to complementary therapies via the NHS.
Fifty semi-structured interviews with adults and parents of children with asthma, from a range of health-care settings, including users and non-users of complementary therapies. Interviews were recorded, transcribed verbatim and the data were analysed thematically.
Thirty-one patients were using complementary therapies for asthma, six were using complementary therapies for other health problems and 13 were non-users. Various therapies were used for asthma, most commonly homeopathy and breathing techniques, predominantly outside the NHS. Two broad themes emerging from the data were expectations about access to information and knowledge about complementary therapies via NHS health professionals, and expectations regarding access to complementary therapy services via the NHS. As a minimum, the majority of participants wanted NHS health professionals to be more 'open' towards and know more about complementary therapies than their patients - perceived as not currently usual. Most were positive about greater NHS access to complementary therapy services, for enhancing patient choice, improving equality in access for less affluent patients and facilitating patients' self-help. Participants who were highly sceptical about complementary therapies argued that lack of scientific evidence of effectiveness prohibited the need for greater complementary therapy knowledge or service provision within the NHS. Alongside their expectations, patients and parents expressed realistic views about facilitators and barriers to greater access.
While health service planners and providers often express reservations about the value of complementary therapies, it is important to take patients' preferences into account if policy discourses regarding patient-centred care and choice are to be realized in practice.
Patients' experiences are an indicator of health-care performance in the accident and emergency department (A&E). The Consumer Quality Index for the Accident and Emergency department (CQI A&E), a questionnaire to assess the quality of care as experienced by patients, was investigated. The internal consistency, construct validity and discriminative capacity of the questionnaire were examined.
In the Netherlands, twenty-one A&Es participated in a cross-sectional survey, covering 4883 patients. The questionnaire consisted of 78 questions. Principal components analysis determined underlying domains. Internal consistency was determined by Cronbach's alpha coefficients, construct validity by Pearson's correlation coefficients and the discriminative capacity by intraclass correlation coefficients and reliability of A&E-level mean scores (G-coefficient).
Seven quality domains emerged from the principal components analysis: information before treatment, timeliness, attitude of health-care professionals, professionalism of received care, information during treatment, environment and facilities, and discharge management. Domains were internally consistent (range: 0.67-0.84). Five domains and the 'global quality rating' had the capacity to discriminate among A&Es (significant intraclass correlation coefficient). Four domains and the 'global quality rating' were close to or above the threshold for reliably demonstrating differences among A&Es. The patients' experiences score on the domain timeliness showed the largest range between the worst- and best-performing A&E.
The CQI A&E is a validated survey to measure health-care performance in the A&E from patients' perspective. Five domains regarding quality of care aspects and the 'global quality rating' had the capacity to discriminate among A&Es.
English NHS guidance emphasizes the importance of involving users in commissioning cancer services. There has been considerable previous research on involving users in service improvement, but not on involvement in commissioning cancer services.Objective
To identify how users were involved as local cancer service commissioning projects sought to implement good practice and what has been learned.DesignParticipatory evaluation with four qualitative case studies based on semi-structured interviews with project stakeholders, observation and documentary analysis. Users were involved in every stage from design to analysis and reporting.Setting and participantsFour English cancer network user involvement in commissioning projects, with 22 stakeholders interviewed.ResultsThematic analysis identified nine themes: initial involvement, preparation for the role, ability to exercise voice, consistency and continuity, where decisions are made, closing the feedback loop, assessing impact, value of experience and diversity.DiscussionOur findings on the impact of user involvement in commissioning cancer services are consistent with other findings on user involvement in service improvement, but highlight the specific issues for involvement in commissioning. Key points include the different perspectives users and professionals may have on the impact of user involvement in commissioning, the time necessary for meaningful involvement, the importance of involving users from the beginning and the value of senior management and PPI facilitator support and training.Conclusions
Users can play an important role in commissioning cancer services, but their ability to do so is contingent on resources being available to support them.
Abstract Recent legislation enabling increased patient and public involvement in health decision-making will increasingly interact with the maturing independent patient movement to open up accountability systems across healthcare. Lay people will develop new roles, building on learning from the independent advocacy sector, self management, and wider active participation. Inevitably, this means a profound cultural challenge for healthcare organizations, and for citizens, as they begin to understand the implications of the new policies, including patient choice.
Agencies promoting national health-care accreditation reform to improve the quality of care and safety of patients are largely working without specific blueprints that can increase the likelihood of success.Objective
This study investigated the development and implementation of the Australian Health Service Safety and Quality Accreditation Scheme and National Safety and Quality Health Service Standards (the Scheme), their expected benefits, and challenges and facilitators to implementation.MethodsA multimethod study was conducted using document analysis, observation and interviews. Data sources were eight government reports, 25 h of observation and 34 interviews with 197 diverse stakeholders.ResultsDevelopment of the Scheme was achieved through extensive consultation conducted over a prolonged period, that is, from 2000 onwards. Participants, prior to implementation, believed the Scheme would produce benefits at multiple levels of the health system. The Scheme offered a national framework to promote patient-centred care, allowing organizations to engage and coordinate professionals’ quality improvement activities. Significant challenges are apparent, including developing and maintaining stakeholder understanding of the Scheme's requirements. Risks must also be addressed. The standardized application of, and reliable assessment against, the standards must be achieved to maintain credibility with the Scheme. Government employment of effective stakeholder engagement strategies, such as structured consultation processes, was viewed as necessary for successful, sustainable implementation.Conclusion
The Australian experience demonstrates that national accreditation reform can engender widespread stakeholder support, but implementation challenges must be overcome. In particular, the fundamental role of continued stakeholder engagement increases the likelihood that such reforms are taken up and spread across health systems.
Background: Public deliberation is recommended for obtaining citizen input to policy development when policies involve contested ethical dimensions, diverse perspectives on how to trade-off competing public interests and low public awareness of these perspectives. Several norms have been proposed for the design of deliberative methods. Evidence is scarce regarding whether such norms are achievable in practice.
Purpose: This paper refers to principles of deliberative democracy theory to describe a deliberative public forum on biobanking. Practical challenges and contextual facilitators of achieving deliberative ideals are discussed, along with factors that influenced use of the forum output in policy development.
Method: The forum ran for 4 days over two weekends in Perth, Western Australia. Key methodological features were socio-demographic stratification to randomly recruit a mini-public of citizens for discursive representation, provision of information inclusive of diverse perspectives and framed for difference, provision of a fair way for reasoning and collective decision making and adoption of processes to achieve publicity, accountability and independence from undue institutional influence.
Results: Most design principles were achieved in practice, with the fundamental exception of representativeness. Factors influencing these outcomes, and the use of deliberated outputs to develop policy, included institutional characteristics, the design involvement of deliberative experts and quality of the outputs when compared to other consultation methods.
Conclusions: Public deliberations can achieve design ideals and influence (ethics-based) public health policy. The representation of ‘hard to reach’ citizens and their views needs further consideration, particularly as this relates to the procedural legitimacy of ethical analyses and the just inclusion of deliberative citizen advice within the broader policy-making process.
Health researchers are encouraged to involve service users as partners in their research. There is a need to increase the evidence base of involvement, including an accumulation of empirical accounts of involvement practices, demonstrating how involvement influences research and refinement of the concept itself.
To report the development of a pilot study by academic researchers and stroke service users belonging to a user research group to investigate costs of stroke to individuals and families; to reflect on what this example of user involvement achieved and implications for what involvement means.
We conducted a 2-year ethnographic study that included participant observation, formal and informal interviews with professionals and user group members and documentary analysis. Data were systematically recorded to permit description of processes and reflexive analysis.
We report on five stages of the research process from service user identification of a research question to interpretation of pilot study findings. Professional researchers led the research process and developed a novel method to involve stroke service users in the development of a questionnaire. Some academic colleagues questioned the value of the proposed investigation as it did not appear to conform to implicit criteria of quality research. We argue that the moral status that user involvement has acquired means that academics' concerns about quality did not prevent the pilot study from being conducted. We suggest that much of what was undertaken might be considered standard good practice in developing new research studies but also identify additional benefits of user involvement. Implications for conceptual development and evaluation are discussed.
To explore women's goals and goal attainment for the conservative and surgical treatment of stress urinary incontinence (SUI), and to examine the feasibility of Goal Attainment Scaling (GAS) as an outcome measure in this population.
Despite the range of treatments for SUI, little is known about the outcomes patients consider important. Current instruments measure the impact of SUI on the ability to live a 'normal' life without addressing what normal looks like for the patient. Patient-generated measures that address what a patient aims to achieve may fill this gap.
A mixed-methods exploratory design combined semi-structured interviews with validated questionnaires and individualized rating of goal achievement. SETTING AND PARTICIPANTS PARTICIPANTS: with SUI (n = 18) were interviewed in their homes prior to initiation of treatment and 3-6 months afterwards.
Participants reported individualized goals pre-treatment and rated goal attainment after surgical and conservative therapy. Quality of life impact and change were measured using short forms of the Incontinence Impact Questionnaire and Urinary Distress Inventory.
Women expressed a median of four highly individualized treatment-related goals but goal achievement following conservative treatment was poor. GAS was not feasible as an outcome measure; women readily identified personal goals but could not independently identify graded levels of attainment for each goal.
Although further work is needed to examine the most feasible, valid, and reliable method of measuring goal achievement in research, asking patients with UI to identify pre-treatment goals may provide useful information to guide treatment-related decision making.
To investigate the characteristics and achievements of cancer partnership groups--collaborative service improvement groups formed of NHS staff and service users--in the 34 cancer networks in England, and in particular to explore the influence that such groups had on local cancer services.
A qualitative approach employing a structured telephone survey, face-to-face interviews and documentary analysis.
Thirty cancer networks in England with an active Partnership Group completed the telephone survey. From these 30 networks, six networks were subsequently selected from which service users and NHS professionals involved in partnership groups and NHS professionals who were non-members were recruited to take part in face-to-face interviews.
Partnership groups were established in the majority of cancer networks. Typically, these groups were at network level, been established for less than a year, met once every 2 months, and were populated with both service users and health-care professionals. Five common activities and achievements were identified: establishment of the group itself; acting as a 'reference' group for consultation; networking and representation on other groups; patient information and communication and proactive influencing. Activities progressed in scale and complexity as groups evolved. Groups had learnt the basics of change management and some identified a more sophisticated understanding of change processes in the NHS as essential for the group's motivation and survival. When gauging the impact of involvement strategies it would seem important to subscribe to broad indicators of success that include both process and outcome measures.
There is an increasing prevalence of children/young people with long-term conditions (LTC) in the UK due to improvements in health-care management and delivery. These children are often involved, from an early age, in their own care and management; yet, there are little data to support how or when they develop the necessary skills and knowledge to become competent at this care.Objective
This study aimed to understand self-management of haemophilia, from a child's perspective, in the 21st century in the UK where intensive prophylactic therapy is given from early childhood.DesignA qualitative study using grounded theory to evaluate life-experiences of children and young people with haemophilia.Setting and participantsThirty boys aged 4-16 with severe haemophilia treated at a single paediatric haemophilia care centre were interviewed at home or in a focus group.Intervention/variablesMultimethod qualitative research including age-appropriate research tools (draw and write, photo-elicitation and interviews) to facilitate data collection from children.ResultsBoys develop self-management skills over time. They learn from health-care professionals, their parents and other family members with haemophilia.DiscussionSelf-management skills (bleed recognition, self-infusion, self and medicines management, pain and risk management and conceptualizing preventative therapy) are developed through experiential learning and individualized education, and not through formalized expert patient programmes.Conclusion
The boys in this study have benefited from early prophylactic factor replacement therapy. They develop skills in haemophilia and self-management at a relatively young age and are experts in their own haemophilia care.
This study focuses on patients' participation in treatment decisions related to the delivery of oral health care in the social welfare state of Sweden. In 1985, the National Dental Service Act gave dental patients the right to take an active role in decisions regarding their treatment and, in doing so, strengthened them as consumers. Little is known how dentists in Sweden have adapted to this change.
This study explores how dentists in Sweden perceive and experience involving patients in dental treatment decisions.
Data were collected from open-ended interviews with nineteen dentists, and an inductive qualitative content analysis was chosen to analyse the transcribed interviews.
Involving patients in treatment decisions appeared to be delicate balancing acts between the ideals of patient involvement and the reality of how it is practised in Sweden. These balancing acts in turn revealed obstacles to patient involvement and the role that economy can play on the decisions of some patients regarding their treatment.
This study has given insight into a relationship in which some dentists in Sweden find it hard to adapt to and change their professional role with patients who appear to act more as consumers. For these dentists, better practice of patient involvement may require adoption of a more consumerist approach. However, in situations where economy influences patients' treatment choices, the ideals of patient involvement may remain unattainable.
Little is known about community pharmacist-patient interaction within a consultation room, particularly in terms of patient activation and engagement.
To explore pharmacists' communication and attitudes while providing advanced medication-related services.
A cross-sectional descriptive study, using the Roter Interaction Analysis System (RIAS) framework, to analyse a sample of audio-recorded pharmaceutical care consultations with elderly patients.
Around 15.0 per cent of pharmacists' utterances and 3.6 per cent of patients' were related to engagement with the latter during the exchange. To improve health outcomes, such as adherence to a therapeutic regime, pharmacists should augment patients' participation in the dialogue, facilitating concerns and disclosure of doubts, thus improving correct medication use behaviour.
Involving the public in decision-making has become a bureaucratic pre-occupation for every health agency in the UK. In this paper we offer an innovative approach for local participation in health decision-making through the development of a 'grounded' citizens' jury. We describe the process of one such jury commissioned by a Primary Care Group in the north-west of England, which was located in an area suffering intractable health inequalities. Twelve local people aged between 17 and 70 were recruited to come together for a week to hear evidence, ask questions and debate what they felt would improve the health and well-being of people living in the area. The jury process acted effectively as a grass-roots health needs assessment and amongst other outcomes, resulted in the setting up of a community health centre run by a board consisting of members of the community (including two jurors) together with local agencies. The methodology described here contrasts with that practiced by what we term 'the consultation industry', which is primarily interested in the use of fixed models to generate the public view as a standardized output, a product, developed to serve the needs of an established policy process, with little interest in effecting change. We outline four principles underpinning our approach: deliberation, integration, sustainability and accountability. We argue that citizens' juries and other consultation initiatives need to be reclaimed from that which merely serves the policy process and become 'grounded', a tool for activism, in which local people are agents in the development of policies affecting their lives.