Patient Involvement In Health Care Research Articles

"I am not just a place for implementation. I should be a partner": A qualitative study of patient perceptions of their involvement in care in Saudi Arabia

Introduction: Patient involvement in care is a major component of high quality care and is becoming  recognized worldwide with many benefits for improving patient outcomes. However, little is known about patient involvement in care in the Middle East region. 
 Objectives: To evaluate patients’ perceptions of their involvement during their interactions with health care providers in Saudi Arabia.
 Methods: A qualitative exploratory study using semi structured interviews was conducted from February 2022 to March 2022. Responses were transcribed and analysed using a thematic data analysis approach.
 Results: We conducted seven interviews with patients with diabetes ranging in age from 19 to 69 years old. We identified the following themes:1) patients’ perceptions of their involvement in care, 2) barriers to patient involvement, 3) effective communication, 4) empathy, and 5) culture. We found that patients had minimal knowledge of patient involvement in care
 Conclusion: There is a clear need to improve education and awareness of patient involvement in health care in Saudi Arabia. By educating patients about the possibilities of patient involvement and explaining their role it will make it easier for patients to understand appropriate levels of involvement. In addition, there is a need to understand and establish frameworks which acknowledge the impact of culture on patient centred care in Saudi Arabia.
 Key words: patient involvement, patient centered care, Saudi Arabia
  

Medical student attitudes to patient involvement in healthcare decision-making and research

ObjectivePatient involvement is used to describe the inclusion of patients as active participants in healthcare decision-making and research. This study aimed to investigate incoming year 1 medical (MBChB) students’ attitudes...

Supporting care engagement in primary care; the development of a maturity matrix.

Care engagement or active patient involvement in healthcare contributes to the quality of primary care, but organisational preconditions in routine practice need to be aligned. A Maturity Matrix for Care Engagement to assess and discuss these preconditions in the general practice team was developed and tested on feasibility and acceptability in general practice. A systematic user-centred approach was applied, starting with a scoping literature search to describe the domains on the horizontal axis of the maturity matrix. The domains and growing steps (vertical axis) were refined by patients (n = 16) and general practice staff (n = 11) in three focus group discussions and reviewed by six experts (local facilitators and scientists). Seven domains could be distinguished: Personalised Care, Shared Decision Making, Self-Management, Patient as Partner, Supportive Means, Patient Environment, and Teamwork among Healthcare Professionals. The growing steps described three to six activities per domain (n = 32 in total) that contribute to care engagement. Local facilitators implemented the tool in two general practice teams according to a user guide, starting with a two-hour kick-off meeting on care engagement. In the next step, practitioners, nurses and assistants in each practice indicated their score on the domains individually. The scores were discussed in the facilitated practice meeting which was aimed at SMART improvement plans. Feasibility and acceptability were assessed in interviews showing that the tool was well received by the pilot practices, although the practice assistants had difficulties scoring some of the activities as they did not always relate to their daily work. An assessment after three months showed changes in practice organisation towards increased care engagement. The maturity matrix on care engagement is a tool to identify the organisational practice maturity for care engagement. Suggested adaptations must be implemented before large-scale testing.

Promoting health literacy and sense of coherence in primary care patients with long-term impaired work ability—a pilot study

Objective Evaluate feasibility, partnerships, and study design of intervention to minimise sick leave. Design and setting The design was a pilot single arm intervention study in primary health care. Outcome measures at follow-ups for each participant were compared with baseline data for the same person. Subjects Twenty primary health care patients with recurrent or long-term sick leave or health-related unemployment. Intervention Patient education through interactive study groups that met half a day a week for eight subsequent weeks. Groups were led by experienced but not medically trained facilitators. The intervention was designed to improve participant health literacy, sense of coherence, health-related quality of life, and patient involvement in healthcare. Main outcome measures Primary outcome was the level of sick leave. Sick leave data were obtained from medical records when available, otherwise patient reported. Secondary outcomes regarding health literacy, sense of coherence, and health-related quality of life were measured with validated questionnaires at baseline and follow-ups. Results Level of sick leave decreased significantly and participation in work preparatory activities increased during follow-up. Health literacy, sense of coherence (subscale sense of meaningfulness), and health-related quality of life (subscale social functioning) showed statistically significant improvement. Intervention, partnerships, and study design were feasible. Conclusion An educational programme, conducted in cooperation between primary health care and partners outside the healthcare system, was feasible and showed an impact on sick leave, health literacy, sense of coherence, and health-related quality of life. KEY FINDINGS A pilot study to evaluate an educational programme with study groups conducted in cooperation between primary health care and partners outside the healthcare system showed good feasibility. Sick leave decreased significantly six months after baseline. Health literacy, sense of coherence (subscale sense of meaningfulness), and health-related quality of life (subscale social function) improved significantly 6 months after baseline.

Where are we in shared decision-making in Italy? A brief updated review

The aim of this paper is to provide an overview of the current state of the art concerning patient-centred care (PCC), shared decision-making (SDM), and patient involvement in health care in Italy, by updating the previous versions of the review. In the past 5 years some progress has been made towards a higher involvement of patients in their health care and patient-centredness into the national health care system. The updated scoping literature search focused on articles reporting primary data collected in Italy and showed a great increase in the number of publications. Nonetheless, the research efforts are still relatively sporadic compared to other countries especially as for evaluations of interventions and, most notably, they are not driven by a consistent effort to promote SDM and PCC in clinical practice.

Patient autonomy in dentistry: demonstrating the role for shared decision making

BackgroundEvidence-based practice, decision aids, patient preferences and autonomy preferences (AP) play an important role in making decisions with the patient. They are crucial in the process of a shared decision making (SDM) and can be incorporated into quality criteria for patient involvement in health care. However, there are few studies on SDM and AP in the field of dentistry. This study explored patients’ autonomy preferences in dentistry in comparison to other medical domains, comparing them with patient preferences in two other cohorts of patients with different conditions and in different health care settings.MethodsA sample of 100 dental patients attending 16 dentists was consecutively recruited in a university-based prosthodontic clinic. Patients’ and dentists’ preferences regarding their roles in dental decision making for commonly performed diagnostic and treatment decisions were compared using the Control Preference Scale (CPS). This was followed by cross sectional surveys to study autonomy preferences in three additional cohorts recruited from general practices (n = 100), a multiple sclerosis clinic (n = 109), and a university-based prosthodontic clinic (n = 100). A questionnaire with combined items from the Autonomy Preference Index (API) to assess general and the CPS to assess specific preferences was used in the additional cohorts.ResultsDentists were less willing to give patients control than patients were willing to enact autonomy. However, decisions about management of tooth loss were considered relevant for a shared decision making by both parties. When comparing cohorts from different samples, the highest AP was expressed by people with multiple sclerosis and the lowest by patients in dentistry (means: dentistry 2.5, multiple sclerosis 2.1, general practice 2.4, p = .035). There were considerable intra-individual differences in autonomy preferences referring to different decision types (p < .001). In general, more autonomy was desired for treatment decisions in comparison to diagnostic decisions, for trivial compared to severe conditions, and for dental care compared to general practice (all: p < .001).ConclusionThere is an important role of patient participation in decision making in dentistry. Furthermore, PA should be considered with respect to specific medical decisions instead of assessing autonomy preferences in general implying a need for communication skills training of health care professionals.

Physicians’ Perspectives on and Experiences with Breast Cancer Patient Involvement in Health Care

Background: The traditional paternalistic model of medicine has been evolving toward a participatory model in which patients and clinicians work in partnership toward the common goal of improved health. Objective(s): This study aims to explore physicians’ perspectives on and experiences with breast cancer patient involvement in cancer care. Methods: A cross-sectional descriptive study was conducted on 38 physicians in surgery and oncology outpatient clinics and surgery inpatient wards at the Medical Research Institute Hospital-Alexandria University and Ayadi El-Mostakbal Cancer Care Center-Alexandria, Eygpt. A self-administered questionnaire was used to collect data on physicians’ perspectives on patient involvement. Results: Only 8% of the physicians indicated high involvement of their patients. “Receiving enough information” and “knowing the benefits and risks of treatment” were the most frequently reported areas of patient involvement (57.9%). The doctors ranked “low education and low social level” and “lack of awareness” as the most important patient-related barriers and “complex routines” and “unavailability of awareness-raising programs” as the highest-ranked organization-related barriers. Conclusion: Findings of the present study revealed that physicians lack a supportive system to promote patient involvement and that patient involvement needs to be enhanced especially in the public sector.

Evaluation of the \u201c3 Good Questions\u201d program for shared decision-making in pediatric medicine: a feasibility study

The “3 Good Questions” program was developed to increase shared decision making. The current pilot-study determined the feasibility of these questions to increase shared decision-making in Dutch pediatric medicine. Pre-/postintervention surveys were used to include children (10–18 years) at pediatric outpatient clinics of four hospitals in the Netherlands. After their appointment, two different groups of children completed the questionnaires. Group 1 filled in the survey before the intervention; group 2 completed the survey after active implementation of the “3 Good Questions” program. The primary outcome was to determine the feasibility (reach, applicability). Secondary outcomes were related to patient involvement in healthcare and treatment decisions and decision-making process between child and healthcare professional. In total, 168 and 114 children in groups 1 and 2 (61 vs 63% female, P = 0.68; age 13.3 ± 2.4 vs 13.8 ± 2.4 years, P = 0.72), respectively, completed the questionnaire. In group 2, 44% of children were aware of the “3 Good Questions”, of whom 18% posed ≥ 1 of the “3 Good Questions” during their appointment (feasibility). The “3 Good Questions” program led to more shared decision-making (SDM-Q-9: P = < 0.001;95%CI: − 2.43 to − 1.17). The majority of children who have read or heard of the “3 Good Questions” would recommend this program to other children.Conclusion: Implementation of the “3 Good Questions” program seemed feasible, although it is necessary to further explore the implementation of this program at national level as a simple way for children and healthcare professionals to share decisions in practice.What is known• Children have the right to be included in decision-making, and inclusion can improve patient satisfaction and quality of care, and reduce costs.• The “3 Good Questions” program was successfully implemented in adult healthcare to increase shared decision making, and therefore these “3 Good Questions” have been adapted to a child version.What is new• In this pilot study, we found that the implementation of the “3 Good Questions” program to increase shared decision-making in pediatric medicine seemed feasible. Although it is necessary to further explore the implementation of the “3 Good Questions” program at national level as a simple way for children and healthcare professionals to share decisions in practice.

Telemedicine and e-Health Solutions for COVID-19: Patients' Perspective.

Telemedicine and e-HealthVol. 26, No. 7 OpinionFree AccessTelemedicine and e-Health Solutions for COVID-19: Patients' PerspectiveNina Pappot, Gry Assam Taarnhøj, and Helle PappotNina PappotFaculty of Health and Rigshospitalet, University of Copenhagen, Copenhagen, Denmark.Search for more papers by this author, Gry Assam TaarnhøjDepartment of Oncology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark.Search for more papers by this author, and Helle PappotAddress correspondence to: Helle Pappot, MD, DMSc, Department of Oncology 5073, Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark E-mail Address: helle.pappot@regionh.dkDepartment of Oncology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark.Institute for Clinical Medicine, Faculty of Health, Copenhagen, Denmark.Search for more papers by this authorPublished Online:8 Jul 2020https://doi.org/10.1089/tmj.2020.0099AboutSectionsView articleView PDFView PDF Plus ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail View articleLike Telemedicine and eHealth, we think that “telemedicine and e-health alternatives can aid in controlling international pandemics.”1 We comment on the possible psychological and sociological consequences of the pandemic itself and the solution hereof by telemedicine. One of the first publications on the role of telemedicine for COVID-19, published as a commentary in the New England Journal of Medicine and entitled “Virtually Perfect? Telemedicine for COVID-19,” sparsely deals with this aspect.2 The authors focus on the important benefits of telemedicine for the health systems with respect to handling COVID-19 but leave out the patients' perspective. Similarly, Ting et al. have high expectations of digital technologies in their comment in Nature Medicine on March 27, 2020, with a focus especially on monitoring, surveillance, and detection and the potential for machine learning and artificial intelligence.3We agree that telemedicine has the potential to solve many issues in this situation, but to our knowledge, its potential has not yet described and taken into consideration from patients' perspective and nor are the possible great benefits of telemedicine well known. As seen from early data from China,4 many individuals will experience isolation during hospitalization or when quarantining at home. Research has described the many adverse effects of isolation in hospitalized patients,5 in particular anxiety and depression.6 Simple e-health tools may give severely ill COVID-19 patients the possibility of having peer-to-peer communication and easily obtaining relevant health information, probably leading to maintained quality of life and better mental health. We and other researchers within the e-health field have demonstrated the importance of e-health in avoiding feeling lonely and improving or maintaining quality of life during other severe illnesses,7 and this impact may also be of importance for patients and relatives dealing with COVID-19.The aim of this viewpoint is to draw attention to the ongoing importance of patient involvement in healthcare on an individual and organizational level when it comes to urgent e-health solutions for COVID-19. In this commentary, we show a group of e-health providers' perception of their tool's functionality according to e-health solutions for COVID-19, and comment on the solutions' possible use in the context of patient involvement.When searching the internet (using Google®) by using search terms such as “e-health solutions for COVID-19 and patient involvement,” very sparse information can be found, and at present, it is not possible to perform literature searches due to very limited published results. However, a “hub” of e-health providers has undertaken the task of providing a global overview of the e-health solutions available for COVID-19.8 Solution providers, consultants advising the healthcare system, and healthcare professionals have been prompted on the internet to contribute with solutions for COVID-19. It has been the hub's aim that all the solutions should be made available across institutions, geographies, and countries. With the hub's permission, we present an overview of the assembled solutions, their functionality, and their distribution by country. Each of the solutions included has been validated by a steering group at the hub according to ease of implementation, COVID-19 impact, post-COVID-19 impact, dependency on external bottlenecks, and localization. The authors have reviewed the solutions with respect to their use for patient involvement during COVID-19.Thirty-eight (n = 38) different providers had their solution included in the hub's overview. In Table 1, eight different functionalities of the included solutions are displayed. Most solutions were Danish, as the hub was situated in Denmark, but in total, there were contributions from 12 different countries. Most solutions were on screening and triage (11/38) and remote patient monitoring (9/38). The hub has added a disclaimer that “it is a preliminary, living, non-exhaustive list compiled with high efforts within a short time frame.” By reviewing the solutions, the authors have assessed, that with the exception of solutions for one functionality (supply storage), all solutions have the potential to involve patients. This can be either as individual patient involvement using e-health tools to secure better communication between patients and hospital staff, or as organizational patient involvement using patients' viewpoints to obtain e-health solutions, which integrates the healthcare systems needs and patients' needs, ensuring an improved outcome.Table 1. Functionality of e-Health Solutions for COVID-19 Showing Number of Providers per Functionality and Nationality of ProviderFUNCTIONALITIESNO. OF PROVIDERS OFFERING SOLUTIONS (N = 38)COUNTRY OF ORIGINCommunication64 Denmark1 Finland1 EgyptHygiene and personal protective equipment22 DenmarkMaintaining critical care32 Denmark1 FinlandRemote patient monitoring94 Finland3 Denmark1 United Kingdom/The Netherlands1 SwedenScreening and triage115 Denmark1 United States1 United Arabic Emirates1 Sweden1 China1 France1 SingaporeSupply storage11 DenmarkTraining11 DenmarkVirtual consultations53 Denmark1 Finland1 NorwayBased on our observations of case stories in the public media in which patients and relatives tell about their experiences during isolation and quarantine with COVID-19, our own experience from being healthcare professionals in this pandemic and experiences from previous research on e-health and patient involvement in other severe illnesses, we find it of importance to draw attention to the ongoing importance of patient involvement when it comes to urgent e-health solutions for COVID-19. We screened an e-health hub's list of possible functionalities for e-health tools during COVID-19 and found that for all but one (1/8) of the functionalities, patient involvement may be an element to improve the meaningfulness of the tool, to secure compliance and adherence, but most of all to integrate needs.We suggest and encourage healthcare systems that have the necessary technology to implement telemedicine or to go into cooperation with e-health providers, who have already developed accessible technologies, to be able to offer telemedicine to patients and their relatives. It is of importance that official public-health organizations take on this task, and Hernandez-Garcia et al.9 recently described the difference in information concerning the prevention of COVID-19, when found on websites from official public-health organizations versus digital media, in favor of official public-health organizations. This difference may also count for e-health solutions with patient involvement. Apart from all the logistic improvements and technological advantages, the implementation of e-health for COVID-19 will enable isolated individuals to receive timely information and to maintain a sense of social belonging. When this crisis is over, we must also remember to consider the social, organizational, and technological factors impacting both patients' and clinicians' adoption of mobile health tools, as Jacobs et al. has described for m-health in general,10 and patient involvement might be further needed to suggest usable and meaningful solutions. There is no time for hesitation. It is crucial to employ every possible tool to avoid feelings of loneliness, stress, and anxiety, which may even worsen physical symptoms. Hopefully, the COVID-19 pandemic can benefit from existing technologies and help solve patients' needs for information and ongoing social contact during isolation.Disclosure StatementThe authors report no conflicts of interest in this work.Funding InformationNo funding was received for this article.

Parental experience of bedside handover during childbirth: A qualitative interview study

BackgroundIt has been described that bedside reporting can contribute to patient safety and increase patient involvement in healthcare. To our knowledge, however, there is no existing research on bedside handover during labour. AimThe aim of this study was to examine the patient’s experiences of bedside handover during labour. MethodA qualitative design was used. Nineteen couples were interviewed after childbirth regarding their experiences of bedside handover during delivery. Twelve of those had experienced bedside handover and were, thereby, included in the study. The interviews were performed in a delivery ward in Stockholm during January 2018. The material was analysed according to content analysis. ResultsFour main categories emerged from the data: non-verbal communication, verbal communication, concerns, and birth experience. In general, bedside handover was perceived to be positive, the participants felt they were treated professionally, and that they had been involved during the handover. One advantage with the handover was the possibility for parents to confirm the sharing of information during the handover, which made them feel secure. Moreover, most of the parents reported they received good treatment and had a good labour experience. Parents’ experiences of bedside handover and midwives’ support were summarised as follows: midwives used common words and avoided using medical terminology, and they kept eye contact with the woman and her partner. ConclusionBedside handover was experienced by both parents as a way of being positively included in the care of their newborn. The caregivers were described as being attentive, respectful, and were good listeners.

Factors Affecting Physical Self-Care Among Patients with Tuberculosis

&lt;p&gt;&lt;strong&gt;Background&lt;/strong&gt; physical self-care is necessary to gain patient involvement in health care in order to improve health outcome among tuberculosis patients. However, Factors related to support of physical self-care among patient tuberculosis under treatment was very rarely considered. This study aimed to identify the correlation between coping strategy, self-care management process and family well-being as factors associated with physical self-care. &lt;strong&gt;Method: &lt;/strong&gt;A correlation study was conducted among forty-five of tuberculosis patients using purposive sampling. Data were collected within follow up session after implementing self-management support intervention by using physical self-care, coping strategy, self-care management process and family well-being questionnaire. Pearson test was used to analyze the data. &lt;strong&gt;Result: &lt;/strong&gt;There were a significant association between self-care management process (r= 0.590; p=0.000), family well-being (children) (r=0.331; p=0.000) and physical self-care. However, there were no relationship between family well-being (parent) (p=0.789), coping strategy (p=0.874) and physical self-care among tuberculosis patient. &lt;strong&gt;Conclusion:&lt;/strong&gt; Self-care management process and family well-being on children are essential factors to improve physical self-care among tuberculosis patient. Therefore, intervention which integrate those factors are important to enhance physical self-care among patients with tuberculosis&lt;/p&gt;

Patient-controlled oral analgesia at acute abdominal pain: A before-and-after intervention study of pain management during hospital stay

AimTo investigate the patient experience of pain management, when patient-controlled oral analgesia was compared with standard care for patients admitted to hospital with acute abdominal pain. The primary outcome measures were pain intensity and patient perception of care. BackgroundPain management of patients admitted to hospital with acute abdominal pain can be insufficient. Patient involvement in health care has been seen to have benefits for patients. MethodsA before-and-after intervention study was conducted in an emergency department observation unit and a surgical department. Data were collected from a questionnaire (APS-POQ-R-D) with the six subscales: pain severity, perception of care, interference with activity, interference with emotions, side effects and patient-related barriers. ResultsA total of 156 patients were included. During admission the median score (0–10 scale) for the pain intensity and patient perception of care subscale was 4 (p = 0.96) and 8 (p = 0.92), respectively, in both the control and intervention group. On the activity subscale, the median scores were 6 and 5 (p = 0.17); on the emotion subscale, the scores were 5 and 4 (p = 0.31); and on the side effect subscale, the scores were 3 and 4 (p = 0.18) in the control and intervention group, respectively. Overall, the score was 5–8 at one item about being allowed to participate in decisions about pain treatment as much as wanted. ConclusionPatient-controlled oral analgesia did not improve patient experience of pain management for patients admitted to hospital with acute abdominal pain.

‘Slow co-production’ for deeper patient involvement in health care

Slow co-production, achieved by involving patients in in-depth research, can help deepen patient involvement in health care. In this case study, the authors describe how slow co-production offers a specific and mutually beneficial form of patient and public involvement and engagement.

MS 27.04 Approaches to Patient-Centric Clinical Trials: Sharing Challenges and Lessons Learned

Patient-centricity means much more than episodic patient involvement in health care. A Patient-centric culture requires that patients play an active role in all health care subareas from identifying unmet needs, pre-clinical research, clinical research, drug authorization, drug reimbursement to drug prescription. This study focuses on patient-centricity in clinical trials. While in former days a patient participating in a clinical trial very often felt like a “laboratory mouse” only being instructed what to do and often without any understandable information nowadays those responsible for research and drug development discover the advantages of patient involvement such as better recruitment, patient friendly protocols, a better retention rate etc. Till now the main focus was effectiveness and safety of drugs to be shown by cost-intensive clinical trials. Nowadays value of treatments and relevance of outcomes to patients are of special interest. Patient Advocacy organizations help with recruitment by informing their members about new clinical trials. Crowdsourcing techniques addressing different communities like medical experts, patients and researchers are used to provide responses to survey questions. Apart from the arising enthusiasm about the doubtlessly potential opportunities the necessary requirements and their costs such as patient education costs, efforts to establish long-term partnership with patient advocacy groups, implementing patient advisory boards, legal framework conditions which protect patients but do not hinder their active participation as stakeholders etc. should not be underestimated. Additionally, pharmaceutical companies need to implement patient-centricity as a strategy across their functional departments. Successful patient-centric clinical trials require the willingness of patients especially of those who experienced clinical trials to provide their input in order to support improvement.

Co-Producing Interprofessional Round Work: Designing Spaces for Patient Partnership.

Within wide-ranging quality improvement agendas, patient involvement in health care is widely accepted as crucial. Ward rounds that include patients' active participation are growing as an approach to involve patients, ensure safety, and improve quality. An emerging approach to studying quality improvement is to focus on “clinical microsystems,” where patients, professionals, and information systems interact. This provides an opportunity to study ward rounds more deeply. A new model of conducting ward rounds implemented through quality improvement work was studied, using the theory of practice architectures as an analytical tool. Practice architecture focuses on the cultural-discursive, social-political, and material-economic conditions that shape what people do in their work. Practice architecture is a sociomaterial theoretical perspective that has the potential to change how we understand relationships between practice, learning, and change. In this study, we examine how changes in practices are accomplished. The results show that practice architecture formed co-productive learning rounds, a possible model integrating quality improvement in daily work. This emerged in the interplay between patients through their “double participation” (as people and as information on screens), and groups of professionals in a ward round room. However, social interplay had to be renegotiated in order to accomplish the goals of all ward rounds.

Blood transfusion: patient identification and empowerment.

Positive patient identification is pivotal to several steps of the transfusion process; it is integral to ensuring that the correct blood is given to the correct patient. If patient misidentification occurs, this has potentially fatal consequences for patients. Historically patient involvement in healthcare has focused on clinical decision making, where the patient, having been provided with medical information, is encouraged to become involved in the decisions related to their individualised treatment. This article explores the aspects of patient contribution to patient safety relating to positive patient identification in transfusion. When involving patients in their care, however, clinicians must recognise the diversity of patients and the capacity of the patient to be involved. It must not be assumed that all patients will be willing or indeed able to participate. Additionally, clinicians' attitudes to patient involvement in patient safety can determine whether cultural change is successful.

Patient involvement in Danish health care.

The purpose of this paper is to investigate different types of patient involvement in Denmark, and to discuss the potential implications of pursuing several strategies for patient involvement simultaneously. The paper presents a preliminary framework for analysis of patient involvement in health care. This framework is used to analyze key governance features of patient involvement in Denmark based on previous research papers and reports describing patient involvement in Danish health care. Patient involvement is important in Denmark at the rhetorical level, and many policies and initiatives have been introduced. All three governance forms (voice, choice and co-production) are used. However, there are important barriers and limitations in translating the rhetoric into practice, and potential synergy and negative synergy effects can be identified when pursuing the strategies at the same time. Because of the chosen research approach, the research results may lack generalizability. Therefore, researchers are encouraged to test the proposed framework further. The paper includes implications for the development of patient involvement in health care. This paper fulfills a need to study different types of patient involvement and to develop a theoretical framework for characterizing and analyzing such involvement strategies.

The use of research evidence on patient preferences in pharmaceutical coverage decisions and clinical practice guideline development: exploratory study into current state of play and potential barriers.

BackgroundThe patient perspective is increasingly considered in healthcare policy decisions. The use of research on patient preferences seems however limited. Using the available research on patient preferences would make healthcare policy decisions more evidence-based regarding the patient perspective. Objective of this study is to investigate whether and how results of research on patient preferences are incorporated in current procedures for pharmaceutical coverage decisions and clinical practice guideline (CPG) development.MethodsA document analysis on procedure descriptions was combined with case studies. Analyses were performed for five European countries. In the document analysis we systematically checked whether the procedure provides guidance on the systematic use of research on patient preferences, and whether the search and use of research on patient preferences is mentioned in the decision making procedure. In the case studies, which were for exploratory purposes, we scored whether or not research question on patient preferences were formulated, whether or not a search strategy including terms relating to patient preferences was mentioned, whether results of this search strategy were shown and finally, how many references with preference-related terms were included in the reference list of the case.ResultsNone of the procedures for pharmaceutical coverage decisions mentions the systematic consideration of research on patient preferences. For CPG development, the Scottish procedure refers to a mandatory literature search. In the Netherlands this step is optional. In the case studies for pharmaceutical coverage decisions only one reference related to patient preferences was found. Some of the case studies for CPG included research questions, search strategies and references relating to patient preferences.ConclusionsThis study illustrates that systematic consideration of research on patient preferences in pharmaceutical coverage decisions and guideline development is limited, or if taken into account, this is not visible. This contrasts the strong movement towards patient involvement in health care. Several potential barriers may explain the limited use of research on patient preferences.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-014-0540-2) contains supplementary material, which is available to authorized users.

Patient and community engagement: the approach at university health network.

In the past few years, all of us in healthcare have heard phrases such as "patient engagement," "community engagement," "stakeholder engagement," "patient feedback," "community involvement," "patients as partners in care," "patient centred care," "patient experience" and "patient involvement in healthcare." These phrases (and many more that have not been identified) speak to a process whereby those people who have a legitimate and meaningful relationship with the healthcare organization and its providers should be involved in a meaningful discourse and set of transactions with the organization and the providers. If involvement doesn't happen naturally, then there is a sense that some sort of definitive outreach should occur that will engage and enroll meaningful involvement in a variety of ways.

Reflections on informed choice in resource-poor settings: The case of infant feeding counselling in PMTCT programmes in Tanzania

A growing emphasis on patient involvement in health care has brought ‘informed choice’ to the core of the debate on provider–patient interaction in global health-care programmes. How the principles of patient involvement and informed choice are implemented and experienced in diverging health systems and cultural contexts are issues of increasing interest. Infant feeding and infant feeding counselling of HIV-positive women have posed particular challenges related to choice. Based on ethnographic research conducted from 5 November 2008 to 5 August 2009 within prevention of mother-to-child transmission of HIV (PMTCT) programmes in two hospitals in rural and semi-urban Tanzania, this study explores nurse counsellors' and HIV-positive women's experiences of infant feeding counselling and patient choice. One of the hospitals (hospital A) promoted exclusive breastfeeding as the only infant feeding option, while the other hospital (hospital B) aimed to follow the Tanzanian PMTCT infant feeding guidelines of 2007 promoting patient choice in infant feeding methods. Women in hospital A expressed trust in the advice given and confidence in their own ability to practice exclusive breastfeeding, while women in hospital B expressed great uncertainty and confusion about how best to feed their infants. This paper reflects on the feasibility of a counselling procedure that promotes choice of infant feeding methods in PMTCT programmes in severely resource-poor settings where HIV-positive women have limited access to resources and to up-to-date knowledge on HIV and infant feeding outside the counselling room. We suggest that a universalistic procedure presenting the same unambiguous message on infant feeding to all women enrolled in the PMTCT programme in this and similar settings is likely to produce more confidence, less confusion and, hence, better results in terms of HIV-free survival of the baby.