Annotated Bibliography

Annotated Bibliography: Patient Empowerment

1) Anderson, R. M., & Funnell, M. M. (2011). Patient empowerment: myths and misconceptions. 
The article clarifies the concept of empowerment and correct common misconceptions about its implementation in diabetes care and education. While patient empowerment does assist patients in self-selected changes related to physical activity, nutrition, and weight, the concept is still vague. Patient empowerment has become essential to diabetes education however, an accurate understanding and application has not occurred. By meta-analyzing the literature, patient empowerment can be clarified, and misconceptions can be corrected. Results have found that the traditional approach to care embedded in the training and socialization of health care professionals (HCPs) has made it difficult to embrace empowerment. Based on the data, empowerment occurs when HCPs have acknowledged that patients are in control of their daily diabetes care. HCPs should focus on the goal of increasing the patient’s capacity to think critically and make autonomous decisions. With regards to practice implications, the empowerment approach can be used effectively if there is clarity in all aspects of the concept.

2) Homstrom, I., & Roing, M., (2010). The relation between patient-centeredness and patient empowerment: a discussion on concepts.
The purpose of this article is to focus on the concepts of patient-centeredness and patient empowerment via health opportunities, to increase patient autonomy and involvement in their treatment and care. However, the health care professionals and research groups understand these concepts in different ways. The article thus states that there needs to be common terminology to optimize understanding between patients and providers. The concept comparison or analysis approach based on literature review was performed. The goal of an encounter between patients and caregivers is patient centeredness. It is also an important factor in the broader concept which is patient empowerment. Patient empowerment places greater demands on the caregiver and the organization of healthcare. Thus, the two concepts are correlated, and patient empowerment can be accomplished via patient centeredness. Clarification of patient empowerment and patient centeredness can improve the quality of healthcare, facilitated by health care professionals and aid future research.

3) Aujoulat, I., d’Hoore, W., & Deccache, A. (2007). Patient empowerment in theory and practice: polysemy or cacophony? 
This paper focus on how the term “empowerment” has been used in the care and education of patients with chronic conditions. Using a qualitative method of thematic analysis, fifty-five articles were analyzed. The results found that the term is often defined based on its anticipated outcomes rather than the very nature of it. Regarding the process of empowerment, it is found that: 1) educational objectives of an empowerment-based approach is not disease-specific but instead focus on the reinforcement or development of general psychosocial skills; 2) the empowering methods of education are necessarily patient-centered and based on experimental learning; 3) the provider-patient relationship is to be continuous and self-involving of both parties. Although a well-articulated theory on patient empowerment was not formed, the number of guiding principles and values were revealed. The article mentions that health-care professionals are not to predefine the goals and outcomes of patient empowerment or restrict it to some disease or treatment related outcome. Instead the concept should be discussed and negotiated with each patient based on their situation and life priorities.

4) Aujoulat, I., Marcolongo, R., Bonadiman, L. & Deccache, A. (2008). Reconsidering patient empowerment in chronic illness: a critique of models of self-efficacy and bodily control.  
Based on previous studies, patient empowerment addresses mainly two issues of patients’ experience of illness, which are managing regimens and relating to health-care providers. Achieving self-efficacy, mastery, and control are usually the outcomes of empowerment. An inductive exploratory study was conducted based on interviews with patients to understand the empowerment process as it occurs in patients whose experience of illness has induced a feeling of powerlessness at some point. This can be conceptualized to as a threat to security and identity. The results from the article show that empowerment and control are not the same. Patient empowerment is a process of personal transformation which occurs through: 1) “holding on” to previous roles and self-representations and learning to control disease and treatment 2) “letting go” by accepting to release control and integrate illness and illness-driven boundaries as being part of a reconciled self. The article concludes by mentioning that relinquishing control is as central to empowerment as gaining control. The “successful” process of empowerment occurs when patients come to terms and acknowledge their threatened security and identity not only with treatment, but it may occur via narratives facilitated by health-care providers.

5) Samoocha, D, Bruinvels, D, J., Elbers, N, A., Anema, J, R., & van der Beek, A, J. (2010). Effectiveness of web-based interventions on patient empowerment: A systematic review and meta-analysis. 
The concept of patient empowerment is applied often and growing in popularity. Using the Internet and eHealth, many empowerment initiatives for patients are delivered online. The purpose of this article is to evaluate Web-based interventions and determine if they are effective in increasing patient empowerment in comparison to face-to-face interactions or usual care. A systematic review was performed using various databases from 1985 to 2009 for citations. Based on the meta-analysis, Web-based interventions had a significantly positive effect on empowerment. Self-efficacy and self-esteem had no measured effects. When comparing the face-to-face delivery and the Web-based interventions, no significant effects were found for mastery and self-esteem. Thus, in conclusion the Web-based interventions had positive effects on empowerment when measured with various scales. The results should be interpreted cautiously as the evidence found was low quality. The clinical relevance of the data may be questioned as the significant effects were small overall.

6) Alegria, M., Polo, A., Gao, S., Santana, L., Rothstein, D., Jimenez, A., Hunter, M. L., Mendeieta, F., Oddo, V., & Normand, S. (2008). Evaluation of patient activation and empowerment intervention in mental health care. 
The article begins by stating that patient empowerment and activation may effectively increase minority patient’s attention and retention. Thus, the purpose of the study was to develop and evaluate a patient self-reported activation and empowerment measure in a mental health care setting. Patients from mental health clinics were involved in a training called the The Right Question Project–Mental Health (RQP-MH). By teaching participants to identify certain questions, the intervention helped patients consider their role, process and reasons behind decision making, and empowerment strategies to improve care management. The four main outcomes that were measured include: changes in self-reported patient activation; changes in self-reported patient empowerment; treatment attendance; and retention in treatment. Results showed that participants were likely to schedule at least 1 visit during a 6-month follow-up period and retain treatment. Conclusions drawn from the finding have proven that the intervention can potentially increase self-reported patient activation, retention, and attendance in mental health care for minority populations. By facilitating the patient-provider communication the intervention can help minorities participate in mental health care effectively.

7) EMPATHiE Summary Report, 30 September 2014 
The EMPATHiE Project has analyzed patient empowerment (PE) among patients with chronic diseases. Results have found that there are four strategies that categorize the best practices in PE: established effective practices (such self-management support and patient education); recent innovative practices (such as virtual interactive platforms and tele-monitoring through smart-phones); shared decision-making practices and systemic changes regarding the model of care (such as the chronic care model). An analysis of the facilitators and barriers were also performed suggesting that future policy agendas should consider focusing on improving the education of patients and the public, the education of healthcare professionals to think more holistically in communicating, the restructuring of healthcare delivery and a central common electronic record accessible to patients and professionals. A proposal of an assessment matrix and an improvement tool combined can validate the transferability of good PE practices. By considering future collaborations in Europe on patient empowerment and the analysis of the stakeholder’s preferences, a strategy and action plan can be formulated. Stakeholders also mention that the creation of common repository practices and tools and the development of common indicators as well as an improved evidence base on PE is also welcomed.

8) McAllister, M., Dunn, G., Payne, K., Davies, L., & Todd, C. (2012). Patient empowerment: The need to consider it as a measurable patient-reported outcome for chronic conditions. 
In the UK, patient empowerment and patient evaluation of healthcare is a priority in health care policy. The article supports the consideration of patient empowerment as a direct measurable patient self-reported outcome for chronic conditions and focuses on the issues in applying this approach, outlines the research agenda to enable healthcare evaluation based on patient empowerment. Since the concept is not well defined it is difficult to conduct comparative evaluations of healthcare services based on patient empowerment. The article mentions that there should be a consensus between patients, clinicians, and policymakers about the content and boundaries of the construct before it is applied. The article thereby evaluates defining patient empowerment properly, how to operationalize the concept, policy involvement, and the arguments against patient empowerment and having it as a measurable variable of patient outcomes. The purpose of this evaluation is not to replace existing evaluation methods in healthcare but to supplement and redirect them towards increasing patient empowerment.

9) European Patients’ Forum. (2015). EPF background brief: patient empowerment. 
The paper aims to clarify the concept of patient empowerment and related concepts as used by the European Patients’ Forum (EPF) in the 2015 – 2016 campaign. The purpose is to create a common understanding, rather than having a “limited defined” definition. The EPF internal Working Group had consulted on patient empowerment and the concept is at the core of EPF’s mission and vision. They describe patient empowerment as the ability to promote the development and implementation of policies, strategies, and healthcare services that empower patient to be involved in decision-making and management of their condition based on their preference. It also allows for increased awareness of their rights and responsibilities. It essentially evaluates the definition of empowerment, summarizes the concept in a nutshell, and discusses related concepts such as involvement, health literacy, self-management, and shared decision making. Important issues related to empowerment and access to healthcare are also discussed in relation to empowerment.

10) Gulati, S. (2009). Enabling healthier living through group empowerment: A critical ethnographic study of adolescents with disabilities in the urban slums of north India. 
A new emerged field of study in global health participation and empowerment if the perspective of young people living with disabilities. Adolescent between the ages of 12 and 18 were associated with a community-based rehabilitation program in the urban slums of North India. The main purpose of the article was to identify the perspective of adolescents with disabilities and their rehabilitation challenges, the cultural impact on rehabilitation and the supportive collaboration among adolescent with and without disabilities. Fieldwork was performed, and a conceptual framework entitled the “Adolescent Group Empowerment Pyramid” developed. The concept emphasizes the process of empowering adolescents with disabilities and those without disabilities in a community setting. The group empowerment concept describes adolescents with disabilities working along with their peers towards assuming greater ownership over their rehabilitation. The approach allowed balance between empowerment and the community rather than an aggressive power struggle. The group empowerment encouraged adolescents to work collectively for social and occupational justice. To maintain the sustainability of community-based rehabilitation initiatives, programs must incorporate factors that empower and maintain the interest of the target population.

11) Downing, N. S. & Ross, J. S. (2014). The FDA-mandated withdrawal of 23andMe’s personal genome service. 
The US Food and Drug Administration (FDA) order 23andMe, a genomics company to cease the marketing of the Personal Genome Service (PGS). The PGS is a patient centered tool that provides an array of genetic information to consumers and estimate the risk of more than 200 other health conditions, such as diabetes, celiac disease, and restless leg syndrome. Although patients may be empowered through this service, the role of PGS in clinical practice is unclear. PGS has challenged the FDA’s existing regulatory framework and thus was mandated to withdrawal. Once the sequencing process used by the PGS has proven to be reliable, the product can be administered under physician supervision. Physicians can inform patients about decisions regarding increased risk for any clinical disease and using this approach it would allow continued empowerment of patients to seek out additional health information.

12) Ringdal, M., Chaboyer, W., Ulin, K., Bucknall, T., & Oxelmark, L. (2017). Patient preferences for participation in patient care and safety activities in hospitals. 
The purpose of the study was to explore the preferences of hospitalized patients on participation in their care and safety activities in Sweden. Data was collected over a four month period in 2013 and 2014 from semi-structured interviews that were conducted with 20 patients. Five themes emerged with the thematic analysis: endorsing participation; understanding enables participation; enacting patient safety by participation; impediments to participation; and the significance of participation. The study concludes that patients want to be active participants in their safety and care activities by having a voice, being involved in the decision-making process, sharing information, and possessing knowledge about their conditions. Barriers to participation include power imbalances, lack of patient acuity and patient uncertainty. Patients ‘partaking in care and safety activities seemed to determine whether they were feeling safe or ignored. Thus, promoting patient participation begins by understanding their preferences and needs for care, establishing a good relationship, and paying attention to each patient ability to participate despite illness.

13) Huey-Ming, T. & Pierson, J. M. (2017). What are the highly important and desirable patient engagement actions for self-care as perceived by individuals living in the southern United States? 
The purpose of the study was to identify patient engagement actions that are named as a priority or ones that are desired for community adult patients living in the southern United States. Patient engagement is still ambiguously defined among population health and health professionals. Thus, the study used convenience sampling to recruit subjects from senior centers and the university’s student health department. A total of two hundred and fifty adult patients older than 18 years participated in the study. The study evaluated the need of analyzing patient engagement based on their importance, desirability, and ability to accomplish it. Health care professionals can use this data to assist patients in participating in self-care actions that they can engage in.

14) Haywood, K., Lyddiatt, A., Brace-McDonell, S., Salek, S., & Brace-McDonell. (2017). Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: an international, multiple-stakeholder perspective. 
While patient-driven perspectives and patient engagement are considered essential throughout the research process, the guidance in patient engagement (PE) in HRQoL research is non-existent. This is the first study to identify values that measure PE in contemporary HRQoL research to help allow future good practice guidance. A collaborative activity called “World Café” was hosted and included patient partners, clinicians, and researchers. Values were captured via note-takers and post-it notes. Emergent themes that were evident were: (1) building relationships; (2) improving research quality and impact; and (3) developing best practice. Participants were found to value building genuine, collaborative, and deliberative relationships-underpinned by respect, co-learning, honesty, and equity and the impact of effective PE on research quality and relevance. These values seek to align all stakeholders with purpose, practice, and credibility of PE activities.

15) Xu, R., & Wong, E. L. (2017). Involvement in shared decision-making for patients in public specialist outpatient clinics in Hong Kong. 
The study identifies the link between patient involvement in decision-making and patient socioeconomic characteristics and experience in outpatient clinics in Hong Kong. Interview were conducted and the literature and local context of the public specialist outpatient system in Hong Kong was observed. Results found that patient that were involved in decision making were younger or were living with their families, or were unemployed and had a more prominent role in the decision- making process. Those participants that had a more decisive role in the decision- making process had greater levels of satisfaction and better health status. A challenge in patient centered care is engaging patients in their health care management. The results demonstrate that perceived health status and the experience of using a health service are associated with patient engagement. Thus, the preferred style of decision making is facilitated by understanding patients’ characteristics.

16) Anand, A., Brandwood, H. J., Jameson Evans, M. (2017). Improving Patient Involvement in the Drug Development Process: Case Study of Potential Applications from an Online Peer Support Network. 
The pharmaceutical industry uses social media to market products and gather feedback and comments from consumers. However, social media due to regulations has been used cautiously in the drug development process due to regulations, restrictions on patient engagement, or lack of social media guidelines. Despite this observation, there is a clear drive for increased patient participation in various aspects of the drug development process from both the industry and consumers. HealthUnlocked is one of the world’s largest health networks uses online health communities as a method of increasing patient involvement during the drug development process. Since the population has been identified as having the willingness to be involved in research, numerous methods of engaging users in the process has been identified. This article describes approaches that use online health networks to encourage people in managing their health and as a result allow patient engagement in clinical research with the constraints of industry regulation.