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.
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.
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.
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.