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.     

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

Background

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

Objective

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

Methods

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

Results

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

Discussion and conclusions

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

Patient‐initiated recruitment for clinical research: Evaluation of an outpatient letter research statement

Background

UK Hospital Trusts are charged with increasing patients’ research awareness and willingness to take part in research. This includes implementing strategies to encourage patient‐initiated enquiries about participation.

Objectives

To evaluate the impact of a research statement inserted in outpatient letters in one clinical service, and to derive suggestions on potential steps towards increasing patient‐initiated recruitment.

Setting

A medical outpatient clinic of a research‐active hospital trust, serving an inner‐city multi‐ethnic population across two boroughs.

Methods

Pre‐intervention and post‐intervention questionnaires were administered face‐to‐face to new patients. Questionnaires included closed questions and one open comments section. Data were analysed for frequencies, with thematic coding of open‐ended responses.

Results

The response rates were 87% for the pre‐intervention survey and 92% for the post‐intervention survey. In the post‐intervention survey, 85% of patients did not notice the research statement in the letter. More than half found the statement “a little unclear,” whilst one‐third considered it “clear.” Three‐quarters of respondents perceived the statement to be “a little helpful.” Only one person enquired about participating in clinical research having read the statement in the outpatient letter.

Conclusion

The analysis suggests that simple, single‐solution approaches such as including research statements in outpatient letters are unlikely to be sufficient to significantly facilitate patient‐initiated recruitment. Recruitment efforts need to take into consideration the diversity of patient constituencies including the reasons they seek health care, and how patients can meaningfully access information (research literacy).     

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.     

Preparing researchers for patient and public involvement in scientific research: Development of a hands‐on learning approach through action research

Background

Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5‐year coaching programme.

Objective

To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants.

Methods

A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation.

Findings

The programme comprised a kick‐off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor‐made feedback. The programme concluded with a combined meeting with all stakeholders.

Conclusion

Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers.     

Barriers to and enablers of the promotion of patient and family participation in primary healthcare nursing in Brazil,Germany and Spain: A qualitative study

Background

Most health systems are insufficiently prepared to promote the participation of chronically ill patients in their care. Strong primary health care (PHC) strengthens patients' resources and thus promotes their participation. The tasks of providing continuous care to people with chronic diseases and promoting self-management are the responsibility of PHC nurses. Recent research assessing enablers of or barriers to nurses' efforts to support patients' participation has mostly not considered the special situation of patients with chronic diseases or focused on the PHC setting.

Objective

To investigate enablers of and barriers to PHC nurses' efforts to promote the participation of chronically ill patients in their care.

Methods

We interviewed 34 practicing PHC nurses and 23 key informants with advanced knowledge of PHC nursing practice in Brazil, Germany and Spain. The data was analyzed using thematic coding.

Results

We identified four categories of barriers and enablers. (1) Establishing bonds with patients: Interviewees emphasized that understanding patients' views and behaviours is important for PHC nurses. (2) Cooperation with relatives and families: Good relationships with families are fundamental, however conflicts within families could challenge PHC nurses efforts to strengthen participation. (3) Communication and cooperation within PHC teams: PHC nurses see Cooperative team structures as a potential enabler, while the dominance of a ‘biomedical’ approach to patient care is seen as a barrier. (4) Work environment: Interviewees agreed that increased workload is a barrier to patient participation.

Discussion and Conclusions

Supporting patient participation should be acknowledged as an important responsibility for nurses by general practitioners and PHC planners. PHC nurses should be trained in communicative competence when discussing participation with chronically ill patients. Interprofessional education could strengthen other professionals' understanding of patient participation as a nursing task.

Patient or Public Contribution

This study is part of a research project associated with the research network ‘forges: User-oriented care: Promotion of health in the context of chronic diseases and care dependency’. The study's focus and provisional results were discussed continuously with partners in health and social care practice and presented to and discussed with the public at two conferences in which patient representatives, professionals and researchers participated.     

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

Background

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

Objective

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

Method

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

Results

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

Discussion and conclusion

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

Exploring older and younger adults' preferences for health information and participation in decision making using the Health Information Wants Questionnaire (HIWQ)

Context

Existing measurements of patient preferences cover only a limited range of health information and participation in decision making. A broader approach is necessary to understand the breadth and variations in patient preferences.

Objective

To explore the breadth and variances in patient preferences for health information and participation in decision making and to understand the relationship between age and each type of preference.

Design

The Health Information Wants Questionnaire (HIWQ) was administered during May–December 2010 to gather data about the information and corresponding decision‐making autonomy participants would want in seven areas: diagnosis, treatment, laboratory tests, self‐care, complementary and alternative medicine (CAM), psychosocial factors and health‐care providers.

Setting

A large state university, public libraries and senior centres in Maryland, USA.

Participants

A convenience sample of 438 individuals, including 226 undergraduates (mean age = 20; SD = 2.15) and 212 community‐dwelling older adults (mean age = 72; SD = 9.00).

Main Outcome Measures

Ratings on the information and decision‐making items of the HIWQ.

Results

Participants expressed higher levels of preference for information than for participation in decision making on six of seven subscales. On the psychosocial subscale, they expressed stronger desire for participation in decision making than for information. Age had no predictive effect on the overall preferences or specific preferences for information and participation in decision making about standard treatments and CAM. The predictive effect of age on the other types of preferences varied significantly.

Conclusions

Physicians should take into account the breadth and variations in patient preferences. The predictive effect of age on patient preferences varied depending on the specific area of preferences.     

A meta‐ethnography of the facilitators and barriers to successful implementation of patient complaints processes in health‐care settings

Objective

To synthesize experiences of the patient complaints process for patients and health‐care professionals to identify facilitators and barriers in the successful implementation of patient complaints processes. This will assist the development of cultural change programmes, enabling complaints managers to incorporate stakeholder perspectives into future care.

Design

Systematic literature search and meta‐ethnography, comprising reciprocal syntheses of “patient” and “professional” qualitative studies, combined to form a “line‐of‐argument” embodying both perspectives.

Data sources

MEDLINE, CINAHL and PsycINFO (database inception to April 2015) were searched to identify international literature in primary and secondary health‐care settings, involving qualitative data collection and analysis. Further studies were identified from hand‐searching relevant journals, contacting authors, article reference lists and Google Scholar.

Results

A total of 13 papers, reporting 9 studies from the United Kingdom, Sweden, Australia and New Zealand, were included in the synthesis. Facilitators and barriers to the successful implementation of patient complaints processes were identified across the perspectives of both patients and health‐care professionals. Patients sought to individualize the complaints process by targeting specific professionals who engaged in practices that undermined the identity of patients. In contrast, professionals obscured their own individualism through maintaining a collective identity and withholding personal judgement in relation to patient complaints.

Conclusions

Complainants recognized health‐care professionals as bearers of individual accountability for unsatisfactory care, in opposition to the stance of collective responsibility endorsed by professionals. Implementation of patient complaints processes must reconcile the need for individualized resolution, whilst striving to improve the future provision of health care through a collaborative approach between patients and professionals.     

Improving health literacy in a Japanese community population—A pilot study to develop an educational programme

Objective

Although a growing number of interventional studies on health literacy have been conducted recently, the majority were designed in clinical settings, focusing mainly on functional health literacy. This study evaluated a programme designed to improve health literacy in a community population, with a scope of going beyond functional health literacy.

Methods

In collaboration with an Approved Specified Nonprofit organization (NPO), we evaluated a five‐session programme designed to provide basic knowledge on health‐care policy and systems, current issues in health care in Japan, patient roles and relationships with health‐care providers and interpersonal skills. In total, 67 of 81 programme participants agreed to participate in the study, and 54 returned the completed questionnaires at baseline and at follow‐up. Health literacy and trust in the medical profession were measured at baseline and at follow‐up. Participants’ learning through the programme was qualitatively analysed by thematic analysis.

Results

Quantitative examinations of the changes in health literacy and degree of trust in medical professionals between the baseline and follow‐up suggested that health literacy significantly improved after implementing the programme. The thematic analysis of participants’ learning throughout the programme suggested that they not only acquired knowledge and skills but also experienced a shift in their beliefs and behaviours.

Discussion

Providing individuals who are motivated to learn about health‐care systems and collaborate with health‐care providers with the necessary knowledge and skills may improve their health literacy, which could enable them to maintain and promote their health and that of their family and other people around them.     

Measuring disease-specific quality of life in rare populations: a practical approach to cross-cultural translation

Background

To assess the internal construct validity of the Perceived Impact of Problem Profile (PIPP), a patient based outcome measure based on the International Classification of Functioning, Disability and Health (ICF), which assesses impact and distress, in an osteoarthritis (OA) cohort.

Methods

A questionnaire comprising the 23-item PIPP, which assesses five domains (mobility, participation, self care, psychological well being and relationships), the Western Ontario McMasters University Osteoarthritis Index (WOMAC), the General Well-Being Index (GWBI), and the Hospital Anxiety and Depression Scale (HADS) was posted to people with clinician diagnosed OA. Assessment of the internal construct validity of the PIPP was undertaken using Rasch analysis performed with RUMM2020 software and concurrent validity through comparator measures.

Results

Two hundred and fifty-nine participants with OA responded. Analysis of the five individual domains of the PIPP indicated that there was good fit to the Rasch model, with high person separation reliability. One item required removal from the Mobility subscale and the Participation subscale. There were strong correlations between the PIPP Mobility scores and the WOMAC disability and pain subscales (rho = .73 and rho = .68), and between the PIPP Psychological well-being and HADS Depression (rho = .71) and GWBI (rho = -.69). High inter-correlations between the impact and distress subscales for each domain (range rho = .85 to .96), suggested redundancy of the latter.

Conclusion

This study demonstrates that the PIPP has good psychometric properties in an OA population. The PIPP, using just the impact subscales, provides a brief, reliable and valid means of assessing the impact of OA from the individual's perspective and operationalizing the bio-psychosocial model by the application of a single multi-domain questionnaire.     

Development of the Engage with Impact Toolkit: A comprehensive resource to support the evaluation of patient,family and caregiver engagement in health systems

Introduction

Recent shifts in the patient, family and caregiver engagement field have focused greater attention on measurement and evaluation, including the impacts of engagement efforts. Current evaluation tools offer limited support to organizations seeking to reorient their efforts in this way. We addressed this gap through the development of an impact measurement framework and accompanying evaluation toolkit—the Engage with Impact Toolkit.

Methods

The measurement framework and toolkit were co-designed with the Evaluating Patient Engagement Working Group, a multidisciplinary group of patient, family and caregiver partners, engagement specialists, researchers and government personnel. Project activities occurred over four phases: (1) project scoping and literature review; (2) modified concept mapping; (3) working group deliberations and (4) toolkit web design.

Results

The project scope was to develop a measurement framework and an evaluation toolkit for patient engagement in health systems that were practical, accessible, menu-driven and aligned with current system priorities. Concept mapping yielded 237 impact statements that were sorted, discussed and combined into 81 unique items. A shorter list of 50 items (rated 8.0 or higher out of 10) was further consolidated to generate a final list of 35 items mapped across 8 conceptual domains of impact: (1) knowledge and skills; (2) confidence and trust; (3) equity and inclusivity; (4) priorities and decisions; (5) effectiveness and efficiency; (6) patient-centredness; (7) culture change and (8) patient outcomes and experience. Working Group members rated the final list for importance (1–5) and identified a core set of 33 items (one for each of the 8 domains and 25 supplementary items). Two domains (priorities and decisions; and culture change) yielded the highest overall importance ratings (4.8). A web-based toolkit ( www.evaluateengagement.ca ) hosts the measurement framework and related evaluation supports.

Conclusion

The Engage with Impact Toolkit builds on existing engagement evaluation tools but brings a more explicit focus to supporting organizations to assess the impacts of their engagement work.

Patient Contribution

Patient, family and caregiver partners led the early conceptualization of this work and were involved at all stages and in all aspects of the work. As end-users of the toolkit, their perspectives, knowledge and opinions were critical.     

Expect the unexpected: patients’ and families’ expectations and experiences of new clinical procedures

Background

Early stage clinical innovation often occurs ‘under the radar’ of governance systems for established procedures. Previously impossible or unavailable techniques still being developed involve additional uncertainty and unknown risks and benefits compared with standard procedures. Patient and family expectations, perceptions and experiences of these new procedures and their possible impacts on aspects of patient safety are under‐researched.

Objective

To explore patient and family expectations and experiences of undergoing new clinical procedures.

Setting

A large UK Hospital NHS Foundation Trust with a range of clinically innovative specialties.

Methods

We interviewed 15 patients who received new clinical procedures in a variety of medical and surgical specialties. Qualitative interviews were used to facilitate in‐depth exploration of patient and family views and experiences. Topics included patient and family access to and expectations of the procedure, informed decision making regarding acceptance of new procedures and post‐procedure experiences.

Results

Some patients sought out specific interventions, while others accepted new treatment options that clinicians proposed. Most participants reported that explanations about the procedure and risks were clear, and there were opportunities to ask questions prior to the procedure. Most participants also regarded their procedures as successful. However, post‐procedure information follow‐up was often reported as lacking and some outcomes were considerably problematic and raised patient safety issues.

Discussion

The importance of patients’ and family views in evaluating health care are increasingly recognized. We discuss the implications of our findings for informed decision making and post‐intervention follow‐up.     

The Role of HIPAA Omnibus Rules in Reducing the Frequency of Medical Data Breaches: Insights From an Empirical Study

Policy Points:

• Frequent data breaches in the US health care system undermine the privacy of millions of patients every year—a large number of which happen among business associates of the health care providers that continue to gain unprecedented access to patients’ data as the US health care system becomes digitally integrated.
• Implementation of the HIPAA Omnibus Rules in 2013 has led to a significant decrease in the number of privacy breach incidents among business associates.

Context

Frequent data breaches in the US health care system undermine the privacy of millions of patients every year. A large number of such breaches happens among business associates of the health care providers that continue to gain unprecedented access to patients’ data as the US health care system becomes digitally integrated. The Omnibus Rules of the Health Insurance Portability and Accountability Act (HIPAA), which were enacted in 2013, significantly increased the regulatory oversight and privacy protection requirements of business associates. The objective of this study is to empirically examine the effects of this shift in policy on the frequency of medical privacy breaches among business associates in the US health care system. The findings of this research shed light on how regulatory efforts can protect patients’ privacy.

Methods

Using publicly available data on breach incidents between October 2009 and August 2017 as reported by the Office for Civil Rights (OCR), we conducted an interrupted time‐series analysis and a difference‐in‐differences analysis to examine the immediate and long‐term effects of implementation of HIPAA omnibus rules on the frequency of medical privacy breaches.

Findings

We show that implementation of the omnibus rules led to a significant reduction in the number of breaches among business associates and prevented 180 privacy breaches from happening, which could have affected nearly 18 million Americans.

Conclusions

Implementation of HIPAA omnibus rules may have been a successful federal policy in enhancing privacy protection efforts and reducing the number of breach incidents in the US health care system.     

Expectations of new treatment in rheumatoid arthritis: developing a patient‐generated questionnaire

Background

Service‐user partnerships in research exist in mental health, but there have been few advances in other disciplines, apart from cancer.

Objectives

To develop a patient‐generated expectancy measure for new treatments in rheumatoid arthritis (RA), using a participatory method.

Method

Stage 1: three repeated focus groups and two expert panels with patients with RA conducted by a patient researcher to generate items for the draft questionnaire. Stage 2: feasibility study of draft scale with consecutive outpatient attendees.

Results

Patients identified 21 dimensions of new treatment expectations, grouped into (i) physical, (ii) psycho‐social and (iii) expectations relating to the impact of treatment. This resulted in a draft instrument assessed in a feasibility study.

Discussion and Conclusion

The participatory research method was useful in involving patients actively in research and to produce collaboratively a feasible, valid and acceptable measure in RA. The scale will be included in a longitudinal observational study, with newly diagnosed patients, to assess (i) whether the new scale demonstrates sensitivity to change for expectations when receiving new treatment and (ii) participants' completion rate of the new scale compared with five instruments included in the future study.     

Exploring patient‐reported outcomes following percutaneous coronary intervention: A qualitative study

Background

Percutaneous coronary intervention (PCI) is a common cardiac procedure used to treat obstructive coronary artery disease. Patient‐centred care is a priority in cardiovascular health having been shown to increase patient satisfaction, engagement with rehabilitation activities and reduce anxiety. Evidence indicates that patient‐centred care is best achieved by routine collection of patient‐reported outcomes (PROs). However, existing patient‐reported outcome measures (PROMs) have limited the patient involvement in their development.

Aims

To identify and explore outcomes, patients perceive as important following PCI.

Methods

A qualitative design was adopted. Eight focus groups and five semi‐structured interviews were conducted with 32 patients who had undergone PCI in the previous 6 months. Outcomes were identified and mapped under the U.S. Food and Drug Administration (FDA) patient‐reported outcome (PROs) domains of feeling (physical and psychological outcomes), function and evaluation. Inductive and deductive analysis methods were used with open, axial and thematic coding.

Results

Consistent with prior studies, patients identified feeling and function outcomes such as reductions in physical and psychological symptoms and the ability to perform usual activities as important. Participants also identified a range of new outcomes, including confidence to return to usual activities and evaluation domains such as adverse effects of medications and the importance of patient communication.

Conclusion

The findings of this research should be considered in the design of a cardiac PROM for PCI patients. A PROM which adequately assesses these outcomes can provide clinicians and hospital staff with a foundation in which to address these concerns or symptoms.     

Impact of vertigo and dizziness on self-perceived participation and autonomy in older adults: results from the KORA-Age study

Purpose

The impact of vertigo and dizziness on healthy ageing, and especially on participation, is not fully understood. The objective of this study was to investigate the association of vertigo and dizziness with self-perceived participation and autonomy in older non-institutionalised individuals, adjusted for the presence of other health conditions. Specifically, we wanted to investigate the different effects of vertigo and dizziness on specific components of participation, i.e. restrictions in indoor and outdoor autonomy, family role, social life and relationships, and work and education.

Methods

Data originate from the second wave of the German KORA-Age cohort study collected in 2012. Participation and autonomy was investigated with the Impact on Participation and Autonomy Questionnaire. We used robust regression to analyse the association of vertigo and dizziness with self-perceived participation and autonomy adjusted for covariates.

Results

A total of 822 participants (49.6 % female) had a mean age of 78.1 years (SD 6.39). Participation and autonomy were significantly lower in participants with vertigo and dizziness across all domains. Adjusted for age, sex, and chronic conditions, vertigo and dizziness were significantly associated with participation restrictions in all domains except social life and relationships.

Conclusion

The results of our study indicate that vertigo and dizziness contribute to restrictions in participation and autonomy in individuals of older age. Recognising vertigo and dizziness as independent contributors to loss of autonomy and decreased chances for independent living may create new options for patient care and population health, such as the designing of complex interventions to maintain participation and autonomy.