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

Background

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

Aim

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

Methods

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

Results

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

Conclusions

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

Enhancing health‐care workers' understanding and thinking about people living with co‐occurring mental health and substance use issues through consumer‐led training

Background

Stigma and judgemental assumptions by health workers have been identified as key barriers to accessing health care for people living with co‐occurring mental health and substance use issues (dual diagnosis).

Objective

To evaluate the effectiveness of consumer‐led training by people with dual diagnosis in improving the knowledge, understanding and role adequacy of community health staff to work with this consumer group.

Methods

A controlled before‐and‐after study design with four waves of quantitative data collection was used. Qualitative data were collected to explore participants'' views about training. Participants were staff from two community health services from Victoria, Australia. Recruitment occurred across various work areas: reception, oral health, allied health, counselling and health promotion. At baseline, all participants attended a 4‐h clinician‐led training session. The intervention consisted of a 3‐h consumer‐led training session, developed and delivered by seven individuals living with dual diagnosis. Outcome measures included understanding of dual diagnosis, participants'' feelings of role adequacy and role legitimacy, personal views, and training outcomes and relevance.

Results

Consumer‐led training was associated with a significant increase in understanding. The combination of clinician‐led and consumer‐led training was associated with a positive change in role adequacy.

Conclusions

Consumer‐led training is a promising approach to enhance primary health‐care workers'' understanding of the issues faced by dual‐diagnosis consumers, with such positive effects persisting over time. Used alongside other organizational capacity building strategies, consumer‐led training has the potential to help address stigma and judgemental attitudes by health workers and improve access to services for this consumer group.     

Critical appraisal training increases understanding and confidence and enhances the use of evidence in diverse categories of learners

Background

Training in evidence‐based medicine is most commonly offered to physicians, medical students and health‐care decision‐makers.

Setting and participants

We partnered with community organizations to recruit participants and develop trainings for consumers, non‐physician health‐care providers and journalists in California.

Intervention

We conducted half‐day and one‐day workshops in critical appraisal of health evidence. Workshops consisted of didactic presentations, small‐group practice sessions and class discussions.

Outcome measures

We measured knowledge and confidence immediately before and after the workshops and at follow‐up 6 months later. We also asked participants to describe their use of health evidence before the workshops and at follow‐up.

Results

At baseline, 41% of the consumers, 45% of the providers and 57% of the journalists correctly answered questions about health evidence. Scores increased by about 20% (P < 0.05) in all groups at the end of the workshops and remained significantly over baseline at follow‐up. At baseline, 26% of the participants were confident in their understanding of critical appraisal concepts, significantly increasing to 54% after the workshops and sustained (53%) at follow‐up. During discussions, participants’ comments often focused on funding and the potential effects of financial conflicts of interest on study findings. Participants did not use evidence more frequently at follow‐up but said that they applied workshop skills in evaluating research, communicating with others and making decisions about health care.

Conclusion

It is possible to successfully conduct critical appraisal workshops to aid health‐related decision making for groups who have previously not had access to this kind of training.     

Perceptions and attitudes towards exercise among Chinese elders – the implications of culturally based self‐management strategies for effective health‐related help seeking and person‐centred care

Background

Encouraging the uptake of physical activity among a culturally diverse elderly population presents a challenge for health‐care providers across the world. Little is known about the health‐care needs of these populations, for example the increasingly ageing group of Chinese elders in many parts of the world who are now facing later life and increasing challenges to their health.

Objective

This study aimed to explore behaviours and attitudes towards exercise among older Chinese immigrants in the UK to provide insights into the health of Chinese populations in the UK and elsewhere.

Design

A Grounded Theory approach using purposive and theoretical sampling with in‐depth semi‐structured interviews.

Setting and participants

Chinese elders were recruited from Chinese communities in the North West of England. Thirty‐three participants were interviewed face‐to‐face and audio‐recorded.

Results

Participants self‐managed exercise based on cultural perceptions of health and ingrained Chinese values. Professional support and information was lacking and relied on folk norms rather than person‐centred recommendations for healthy living. Inappropriate exercise regimes could act as a substitute for seeking health‐related advice when exercise was often used as a self‐monitored barometer to assess their perceived health status.

Discussion and conclusion

Chinese elders may undertake inappropriate exercise, leading to high‐risk situations, if appropriate professional information is not provided. Health‐care practitioners should devote attention to understanding Chinese elders'' attitudes towards exercise, as this may ultimately lead to successful health promotion activities. A person‐centred approach that acknowledges and works with self‐management practices is advocated.     

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

Background

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

Objectives

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

Methods

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

Main results

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

Conclusions

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

What primary health‐care services are Australian consumers willing to accept from nurse practitioners? A National Survey

Background

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.

Objectives

To ascertain what care Australian health‐care consumers would accept from nurse practitioners in this setting.

Participants

Australian adults over 18 years of age.

Methods

National Survey delivered online. Information about the survey was disseminated through a media campaign, stakeholder engagement and through the health‐care consumer networks nationally.

Results

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.

Conclusions

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.     

Joint replacement recipients' views about health information privacy

Background

Researchers are concerned about the possibility of restricted access to data as a result of specific consent requirements in privacy legislation, potentially resulting in smaller samples and a lack of representativeness which could bias results. In addition, there is uncertainty about what influences individuals to give consent for the use of their personal health information.

Objective

To measure joint replacement recipients'' health information privacy views and to assess potential predictors of these views.

Design

Cross‐sectional survey.

Setting and participants

Potential joint replacement recipients from two teaching hospitals in London, Ontario, Canada.

Main variables

Age, gender, education, employment status, anticipated joint replacement, and expectations for surgery.

Main outcome measures

Privacy concerns as measured by the Concern Scale.

Results

The response rate was 182/253 or 72%. The mean Concern score was 143.9/235.0 for the total sample (range = 82–216). Women had higher levels of privacy concerns than men on slightly over half of the individual questionnaire items. In women, surgical joint, age and employment explained 15% of the variance in concerns about personal health information privacy (P = 0.001). The model explained 6% of the variance in concerns in men (P = 0.138) and was not statistically significant.

Discussion and conclusion

This study indicates that demographic characteristics and health‐care experiences play a role in the variability of health information privacy concerns. A greater understanding of patients'' privacy views about health information could lead to a greater harmonization among privacy rules, research and data access, and the preferences of health‐care consumers.     

Room for improvement: complementary therapy users and the Australian health system

Context

People with chronic conditions who are often in contact with the health‐care system are well placed to reflect on how services meet their needs. Some research characterizes people who use complementary and alternative medicines (CAMs) as a distinct group who opt out of the mainstream health system. However, many CAM users are people with chronic or terminal health conditions who concurrently use mainstream health‐care services. The difference in perspectives between people with chronic conditions who do or do not use CAM has received little attention by researchers.

Objective

To explore the views of CAM users with chronic conditions and identify their perspectives on the health system.

Design and Setting

In‐depth interviews and a self‐administered questionnaire were used to collect data on care‐seeking, self‐management and CAM use among people with type 2 diabetes and/or cardiovascular disease living in Victoria, Australia.

Results

One in four CAM practitioner users was partly motivated to use CAM as a result of their dissatisfaction with the mainstream health system. In general, their dissatisfaction mirrored the concerns of the general population. This included the perceived lack of a humanistic or person‐centred approach, which was central to problems relating to individuals'' clinical encounters as well as to health system design.

Discussion and Conclusion

Participants'' concerns suggest room for improvement in the Australian health system to better reflect patients'' needs. A systems approach is needed to reorient health‐care practitioners to modify the organization of care because of the incentives embedded in the structure of the health‐care system.     

Supporting a person‐centred approach in clinical guidelines. A position paper of the Allied Health Community – Guidelines International Network (G‐I‐N)

Background

A person‐centred approach in the context of health services delivery implies a biopsychosocial model focusing on all factors that influence the person''s health and functioning. Those wishing to monitor change should consider this perspective when they develop and use guidelines to stimulate active consideration of the person''s needs, preferences and participation in goal setting, intervention selection and the use of appropriate outcome measures.

Objective

To develop a position paper that promotes a person‐centred approach in guideline development and implementation.

Design, setting and participants

We used three narrative discussion formats to collect data for achieving consensus: a nominal group technique for the Allied Health Steering Group, an Internet discussion board and a workshop at the annual G‐I‐N conference. We analysed the data for relevant themes to draft recommendations.

Results

We built the position paper on the values of the biopsychosocial model. Four key themes for enhancing a person‐centred approach in clinical guidelines emerged: (i) use a joint definition of health‐related quality of life as an essential component of intervention goals, (ii) incorporate the International Classification of Functioning, Disability and Health (ICF) as a framework for considering all domains related to health, (iii) adopt a shared decision‐making method, and (iv) incorporate patient‐reported health outcome measures. The position statement includes 14 recommendations for guideline developers, implementers and users.

Conclusion

This position paper describes essential elements for incorporating a person‐centred approach in clinical guidelines. The consensus process provided information about barriers and facilitators that might help us develop strategies for implementing person‐centred care.     

Burden of treatment for chronic illness: a concept analysis and review of the literature

Context

Treatment burden, the burden associated with the treatment and management of chronic illness, has not yet been well articulated.

Objective

Using Rodgers'' (1989, Journal of Advanced Nursing, 14, 330–335) method of concept analysis, this review describes the ways in which treatment burden has been conceptualized to define the concept and to develop a framework for understanding its attributes, antecedents and consequences.

Methods

Leading databases were searched electronically between the years 2002 and 2011. To ensure the review focused on actual observations of the concept of interest, articles that did not measure treatment burden (either qualitatively or quantitatively) were excluded. An inductive approach was used to identify themes related to the concept of treatment burden.

Main results

Thirty articles, identified from 1557 abstracts, were included in the review. The attributes of treatment burden include burden as a dynamic process, as a multidimensional concept, and comprising of both subjective and objective elements. Prominent predisposing factors (antecedents) include the person''s age and gender, their family circumstances, possible comorbidity, high use of medications, characteristics of treatment and their relationship with their health‐care provider. The most dominant consequences are poor health and well‐being, non‐adherence to treatment, ineffective resource use and burden on significant others. Furthermore, many of these consequences can also become antecedents, reflecting the cyclic and dynamic nature of treatment burden.

Conclusion

The findings underscore the need for researchers and health‐care professionals to engage in collaborative discussions and make cooperative efforts to help alleviate treatment burden and tailor treatment regimens to the realities of people''s daily lives.     

Trust in government and support for governmental regulation: the case of electronic health records

Background

This paper presents results from a public engagement effort in Nebraska, USA, which measured public opinions about governmental involvement in encouraging the use of electronic health records (EHRs).

Objective

We examine the role of trust in government in contributing to public support for government involvement in the development of EHR technologies. We hypothesize that trust in government will lead to support for federal and state governmental encouragement of the use of EHRs among doctors and insurance companies. Further, because individual experiences with health‐care professionals will reduce perceptions of risk, we expect that support for governmental involvement will be tempered by greater personal experience with the health‐care industry.

Design and Results

Examining a small survey of individuals on the issue, we find general support for both of our hypotheses. The findings suggest that trust in government does have a positive relationship with support for government involvement in the policy domain, but that the frequency of personal experiences with health‐care providers reduces the extent to which the public supports governmental involvement in the development of EHR technology.

Discussion and Conclusion

This inquiry contributes to our understanding of public attitudes towards government involvement in EHRs in the United States specifically and contributes to social science examining links between trust in government and support for governmental activity in the emerging policy domain regarding electronic health records systems.     

Heart failure patients' descriptions of participation in structured home care

Background

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

Objective

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

Design

Qualitative study.

Setting and participants

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

Results

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

Conclusions

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

Aiming for inclusion: a case study of motivations for involvement in mental health‐care governance by ethnic minority users

Objective

To examine the motivations for involvement in mental health‐care governance by socially disadvantaged ethnic minority users.

Design and setting

A qualitative case study approach was employed to investigate the involvement of minority north‐eastern users in mental health‐care governance at CAPS Pedro Pellegrino in Rio de Janeiro, Brazil. Semi‐structured interviews with minority Northeasterners (n = 12) and institutional stakeholders (n = 26) were complemented by participant observation of user assembly and user movement meetings.

Findings

Minority Northeasterners express both individual and collective motivations for involvement in mental health‐care governance. Individual motivations include the desire to increase social interaction, acquire meaningful social roles and overcome the stigma attached to mental illness. Collective motivations include the intent to improve the responsiveness of mental health care and achieve social justice for people with mental problems. Taken together, these motivations demonstrate a strong aspiration by users to promote their social inclusion and the inclusion of others who also experience marginalization. Results also reveal that the involvement of long‐term participants is driven mostly by collective goals while early‐stage participants focus predominantly in dealing with individual concerns. This is at odds with the mutual incentives theory, which postulates that collective motivations prevail over individual motivations in explaining user involvement.

Conclusion

Groups historically excluded from decision‐making processes may identify social inclusion as the core goal of their involvement. Initiatives aiming to increase user participation in health‐care governance must address the range of motivations driving the involvement of users, instead of focusing solely on issues related to health‐care management and provision.     

Including citizens in institutional reviews: expectations and experiences from the Dutch Healthcare Inspectorate

Background

Recent changes in the structure and policy context of Dutch health care have placed the issue of citizen participation high on the agenda of the Dutch Healthcare Inspectorate (IGZ), which conducts quality and safety reviews in medical practices and health‐care institutions. With a few exceptions, the potential role that citizens can play in the regulation of health‐care institutions is overlooked in research on patient/citizen participation in health care.

Objective

This research addressed the following question: What are the (political) expectations for increasing citizen participation in health‐care regulation and how do these compare to regulators'' expectations and experiences in practice?

Design

Because of the largely explorative nature of this study, we used qualitative methods (document and web analysis, focus groups and interviews) to answer this question.

Results

Our study shows that inspectors already have experience with participatory formats that lead to important information. There are three areas where the IGZ is currently increasing citizen participation: (i) providing individuals with information about inspectorate processes and activities, (ii) including patients as sources of information, and (iii) formally reviewing how citizen participation is ensured by health‐care institutions. In situations where the patient has the clearest overview of the whole care trajectory, intensive methods of participation deliver valuable information.

Conclusions

It is important to target participation activities and to capitalize on existing opportunities and activities, rather than creating participation activities for the sake of participation. In this regard, further research on the effectiveness and efficacy of different participatory strategies is necessary.     

Polio survivors' perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities

Introduction

The term ‘post‐polio syndrome’ (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life. Research in this area has focused upon health status rather than its effect on quality of life.

Aim

To gain an in‐depth understanding of the meaning of quality of life for polio survivors and to determine the type of strategies that are used by people with PPS and the support that they consider as important to facilitate participation in everyday life activities that have an impact on their quality of life.

Method

Six focus groups were conducted with 51 participants from two regions in England. Data were audio‐taped and analysed using thematic analysis.

Results

Our research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness. Our research has identified resolvable factors that influence quality of life namely inaccessible environments, attitudes of health‐care professionals and societal attitudes. Polio survivors have tried alternative therapies, chiefly acupuncture and massage, and found them to be effective in enhancing their quality of life.

Conclusion

It is suggested that health‐care professionals should consider factors which influence happiness and implement a person‐centred approach with the views of the polio survivor being listened to. The three factors that influenced quality of life could be resolved by health‐care professionals and by society. With regard to strategies used, we suggest that polio survivors should have access to the treatments that they perceive as important, although further research is required to design optimal interventions for this client group.     

Convergences and divergences of diabetic patients' and healthcare professionals' opinions of care: a qualitative study

Objectives

To investigate opinions'' convergences and divergences of diabetic patients and health‐care professionals on diabetes care and the development of a regional diabetes programme.

Background

Development and implementation of a regional diabetes programme.

Research design

Qualitative study using focus groups to elicit diabetic patients'' and health‐care professionals'' opinions, followed by content analysis.

Setting and participants

Eight focus groups: four focus groups with diabetic patients (n = 39) and four focus groups with various health‐care professionals (n = 34) residing or practicing in the canton of Vaud, Switzerland, respectively.

Results

Perceived quality of diabetes care varied between individuals and types of participants. To improve quality, patients favoured a comprehensive follow‐up while professionals suggested considering existing structures and trained professionals. All participants mentioned communication difficulties between professionals and were favouring teamwork. In addition, they described the role that patients should have in care and self‐management. Financial difficulties were also mentioned by both groups of participants. Finally, they were in favour of the development of a regional diabetes programme adapted to actors'' needs. For patients indeed, such a programme would represent an opportunity to improve information and to have access to comprehensive care. For professionals, it would help the development of local networks and the reinforcement of existing tools and structures.

Discussion and conclusions

Acknowledging convergences and divergences of opinions of both diabetic patients and health‐care professionals should help the further development of a programme adapted to users'' needs, taking all stakeholders interests and priorities into consideration.