Finding a Grassroots Voice for Consumer Empowerment in E-Healthcare: A State Level Perspective Using the Grounded Theory Investigation

Emerging technological innovations such as electronic health records (EHRs), regional health information organizations (RHIOs), and the nationwide health information network (NHIN) have enabled increased sharing of medical records in the healthcare community. Recent studies have shown that patients do not trust their healthcare providers to keep their medical records safe from unauthorized release and want more control over their medical records. Therefore, the notion of patient/consumer empowerment has emerged within the healthcare community’s discussions regarding sharing of medical information and development of policy and technological innovations. In this research, facets of patient empowerment in e-Healthcare will be investigated using a grounded theory approach

Therapy-based exercise from the perspective of adult patients: a qualitative systematic review conducted using an ethnographic approach

© The Author(s) 2019.Objectives: Many patients do not meet recommended levels of therapy-based exercise. This review aims to explore how adult patients view being prescribed therapy-based exercise, the information/education they are given and receive and if/how they independently practise and adhere. Design: A qualitative systematic review conducted using an ethnographic approach and in accordance with the PRISMA statement. Sources: PubMed, CINAHL, SCOPUS and EMBASE databases (01 January 2000–31 December 2018). Methods: Qualitative studies with a focus on engagement/adherence with therapy-based exercise were included. Data extraction and quality appraisal were undertaken by two reviewers. Results were discussed and data synthesized. Results: A total of 20,294 titles were screened, with data extracted from 39 full texts and data from 18 papers used to construct three themes. ‘The Guidance received’ suggests that the type of delivery desired to support and sustain engagement was context-dependent and individually situated. ‘The Therapist as teacher’ advocates that patients see independent therapy-based exercise as a shared activity and value caring, kind and professional qualities in their therapist. ‘The Person as learner’ proposes that when having to engage with and practise therapy-based exercise because of ill-health, patients often see themselves as new learners who experience fear and uncertainty about what to do. Patients may have unacknowledged ambivalences about learning that impact on engagement and persistence. Conclusion: The quality of the interaction between therapists and patients appears integral to patients engaging with, and sustaining practice of, rehabilitation programmes. Programmes need to be individualized, and health care professionals need to take patients’ previous experiences and ambivalences in motivation and empowerment into account.Peer reviewe

Consumer Empowerment in Healthcare Information Exchange: An Investigation Using the Grounded Theory Approach

Emerging technological innovations such as personal health records (PHRs), electronic health records (EHRs) and the nationwide health information network (NHIN) provide the ability to increase the sharing of medical records among healthcare stakeholders. The goal of these innovations is to improve the quality of human healthcare by accessing medical information at the point of care and decreasing medical errors. Technology allows for widespread access to patient medical information, giving providers a comprehensive view of a patient's medical history so that they can make better decisions. The capability to use technology to electronically exchange medical records is called Healthcare Information Exchange (HIE). Recent studies have shown that patients want more control over their medical records. HIE technology can allow patients to control their medical records. Because patients often have chronic illnesses and can be transient when using different providers for care, HIE technology can support patient access and control over the sharing of their medical information between doctors. Therefore, the concern for patient empowerment has emerged within the healthcare community's discussions on HIE technology and policy efforts. A careful review of the literature shows that there is no existing theory of consumer empowerment in HIE, therefore a qualitative approach was utilized. There are two phases to this study: the first reveals the dimensions of consumer empowerment through discussions of United States federal and state empowerment groups as well as individual everyday consumers who do not work in healthcare or information technology fields. Through this investigation of the quest for consumer empowerment in HIE, it was found that Consumer Confidence in HIE, Fairness in HIE, and Consumer Commitment and Engagement in HIE are three dimensions that support consumer empowerment in HIE. These dimensions foundational to the second phase, which describes ways that consumer empowerment may be achieved in HIE. A theory is generated which can aid practitioners in developing and implementing appropriate HIE policy and technology. Academicians can build upon this theory for future research in areas such as incorporating consumer input into HIE technology systems analysis and design and examining the success of initiatives to achieve consumer empowerment in HIE

Incidental or Intentional? Achieving Consumer Empowerment in Electronic Healthcare Information Exchange

The emergence of technology which allows for electronic Healthcare Information Exchange (HIE) has created a need for change in the healthcare industry. Because sensitive health information can be shared electronically between many entities, it is important to re-examine how information should be shared. Recent initiatives have examined HIE technology, with the intention to involve the consumer/patient as a key stakeholder. Such initiatives seek to empower patients, and often claim that new technology can do so. This study investigates the dimensions of consumer empowerment in HIE and how consumer empowerment in HIE could be achieved. The analysis revealed that achieving consumer empowerment is a process of either intentional or incidental change, and is a multi-faceted concept. The process of consumer empowerment is presented from the grounded theory analysis of three levels of data sources. The implications are critical to generate appropriate policy, law, and technology

Managing lifestyle change to reduce coronary risk: a synthesis of qualitative research on peoples’ experiences

Background Coronary heart disease is an incurable condition. The only approach known to slow its progression is healthy lifestyle change and concordance with cardio-protective medicines. Few people fully succeed in these daily activities so potential health improvements are not fully realised. Little is known about peoples’ experiences of managing lifestyle change. The aim of this study was to synthesise qualitative research to explain how participants make lifestyle change after a cardiac event and explore this within the wider illness experience. Methods A qualitative synthesis was conducted drawing upon the principles of meta-ethnography. Qualitative studies were identified through a systematic search of 7 databases using explicit criteria. Key concepts were identified and translated across studies. Findings were discussed and diagrammed during a series of audiotaped meetings. Results The final synthesis is grounded in findings from 27 studies, with over 500 participants (56% male) across 8 countries. All participants experienced a change in their self-identity from what was ‘familiar’ to ‘unfamiliar’. The transition process involved ‘finding new limits and a life worth living’ , ‘finding support for self’ and ‘finding a new normal’. Analyses of these concepts led to the generation of a third order construct, namely an ongoing process of ‘reassessing past, present and future lives’ as participants considered their changed identity. Participants experienced a strong urge to get back to ‘normal’. Support from family and friends could enable or constrain life change and lifestyle changes. Lifestyle change was but one small part of a wider ‘life’ change that occurred. Conclusions The final synthesis presents an interpretation, not evident in the primary studies, of a person-centred model to explain how lifestyle change is situated within ‘wider’ life changes. The magnitude of individual responses to a changed health status varied. Participants experienced distress as their notion of self identity shifted and emotions that reflected the various stages of the grief process were evident in participants’ accounts. The process of self-managing lifestyle took place through experiential learning; the level of engagement with lifestyle change reflected an individual’s unique view of the balance needed to manage ‘realistic change’ whilst leading to a life that was perceived as ‘worth living’. Findings highlight the importance of providing person centred care that aligns with both psychological and physical dimensions of recovery which are inextricably linked

Patient empowerment: designing technology that supports people’s coping strategies

Background: Self-management technologies, such as patient-controlled electronic health records (PCEHRs), have the potential to help people manage and cope with disease. Objectives: This study set out to investigate patient families’ lived experiences of working with a PCEHR. Method: We conducted a semi-structured qualitative field study with patient families and clinicians at a children’s hospital in the UK that uses a PCEHR. All families were managing the health of a child with a serious chronic condition, who was typically under the care of multiple clinicians. As data gathering and analysis progressed, it became clear that while much of the literature assumes that patients are willing and waiting to take more responsibility for and control over their health management (for example, with PCEHRs), only a minority of participants in our study responded in this way. Their experiences with the PCEHR were diverse and strongly shaped by their coping styles. Theory on coping identifies a continuum of coping styles, from approach- to avoidance-oriented, and proposes that patients’ information needs depend on their style. Results: Based on themes that emerged from the data analysis, and informed by prior research on coping styles, we identified three groups of patient families and an outlier, distinguished by their coping style and their PCEHR use. We refer to the outlier as controlling (approach-oriented, highly motivated to use PCEHR), and the three groups as collaborating (approach-oriented, motivated to use PCEHR), cooperating (avoidance-oriented, less motivated to use PCEHR) and avoiding (very avoidance-oriented, not motivated to use PCEHR). Conclusions: The PCEHR met the needs of controller and collaborators better than the needs of co-operators and avoiders. We draw on Self-Determination Theory (SDT) to propose ways in which PCEHR design might better meet the needs of avoidance-oriented users. Further, we high-light the need for families to also relinquish control at times, and propose ways in which PCEHR design might support a better distribution of control, based on effective training, ease of use, com-prehensibility of data security mechanisms, timely information provision (recognising people’s dif-ferent needs), personalisation of use, and easy engagement with clinicians through the PCEHR

Trust, choice and power in mental health

The original publication is available at www.springerlink.co