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Defining Empowerment and Supporting Engagement Using Patient Views From the Citizen Health Information Portal: Qualitative Study.

ABSTRACT: The increasing presence of technology in health care has created new opportunities for patient engagement and with this, an intensified exploration of patient empowerment within the digital health context. While the use of technology, such as patient portals, has been positively received, a clear linkage between digital health solutions, patient empowerment, and health outcomes remains elusive.The primary objective of this research was to explore the views of participants enrolled in an electronic health record portal access trial regarding the resultant influence of this technology on their feelings of patient empowerment.The exploration of patient empowerment within a digital health context was done with participants in a tethered patient portal trial using interpretive description. Interpretive description is a qualitative methodology developed to pragmatically address clinical health questions. Patient demographics, self-reported health status, and self-identified technology adaptation contributed to the assessment of empowerment in this qualitative approach.This research produced a view of patient empowerment within the digital health context summarized in two overarching categories: (1) Being Heard and (2) Moving Forward. In each of these, two subcategories further delineate the aspects of empowerment, as viewed by these participants: Knowing More and Seeing What They See under Being Heard, and Owning Future Steps and Promoting Future Care under Moving Forward. This work also highlighted an ongoing interconnectedness between the concepts of patient empowerment, engagement, and activation and the need to further articulate the unique aspects of each of these.The results of this study contribute needed patient voice to the ongoing evolution of the concept of patient empowerment. In order to move toward more concrete and accurate measure of patient empowerment and engagement in digital health, there must be further consideration of what patients themselves identify as essential aspects of these complex concepts. This research has revealed relational and informational elements as two key areas of focus in the ongoing evolution of patient empowerment operationalization and measure.

SUBMITTER: Risling T

PROVIDER: S-EPMC6231721 | biostudies-other | 2018 Sep

REPOSITORIES: biostudies-other

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Defining Empowerment and Supporting Engagement Using Patient Views From the Citizen Health Information Portal: Qualitative Study.

Risling Tracie T Martinez Juan J Young Jeremy J Thorp-Froslie Nancy N

JMIR medical informatics 20180910 3

<h4>Background</h4>The increasing presence of technology in health care has created new opportunities for patient engagement and with this, an intensified exploration of patient empowerment within the digital health context. While the use of technology, such as patient portals, has been positively received, a clear linkage between digital health solutions, patient empowerment, and health outcomes remains elusive.<h4>Objective</h4>The primary objective of this research was to explore the views of ...[more]

PMID: 30201603

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Project description:BackgroundDigitalization of health care has opened up for new ways to involve and engage patients. With this, increased attention has been put on digital patient portals. There exists some research on patient portals for adolescent patients in general and for adults in mental health care. However, no studies on patient portals for adolescents in mental health care have been identified in a recent review. The aim was therefore to explore the views on using patient portals for adolescents in mental health care among persons involved in and/or being affected by the introduction of a patient portal.MethodsA qualitative study was conducted using individual semi-structured interviews with 14 persons who were healthcare providers in child and adolescent mental health care, young representatives from the user panel, or persons affiliated with an EHR-project introducing a patient portal. The main questions addressed their views on introducing patient portals for adolescents in mental health care and how patient portals and access to clinical notes can affect them and their treatment.ResultsThe findings were categorised into four main themes; "Does access to a patient portal help or harm adolescents?", "Who decides access?", "Mostly a political goal" and "Need for support and competency". Informants mentioned situations in which both adolescents' and parents' access to a patient portal could help adolescents in mental health care, but also where it could potentially harm their treatment and threaten confidentiality. Most informants thought that healthcare providers should have the autonomy to determine which information should be shared with whom, but also requested guidelines to ensure equal practice and support in difficult situations. Some perceived patient portals as the result of a political decision, rather than healthcare providers´ wishes, while others described it as a necessary development towards democratization.ConclusionThe informants' views varied from thinking that a patient portal could support adolescents in mental health care, to worrying that it could be detrimental to the treatment. Informants emphasized that the management should facilitate training and support for healthcare providers in using patient portals and telehealth.

Project description:Purpose: Men with prostate cancer often describe low levels of empowerment. eHealth interventions may represent useful tools to deliver care and education and to meet patients' needs within an empowerment framework. In order to design a platform for cancer patients' empowerment within the H2020 iManageCancer project, the perspective of the target population for the platform was assessed. The present study aims to assess the qualitative experience of prostate cancer patients during treatment in order to provide insights for clinical practice with a particular focus on the design of a web platform to promote cancer patients' empowerment. Methods: Ten patients undergoing radiation therapy treatment took part in a semi-structured interview to explore different aspects of patient empowerment. Four main thematic areas were addressed: patient-healthcare providers' communication, decision-making, needs, and resources. A qualitative approach using thematic analysis was followed. Results: Half of the patients reported little to no possibility to share information and questions with healthcare providers. With regards to decision-making, the role of healthcare providers was perceived as directive/informative, but half of the patients perceived to assume an active role in at least one interaction. Difficulties and needs included the choice of the specialist or of the structure after diagnosis, clinicians' support in self-management, surgical consequences, and side effects, preparation for radiation therapy. Resources included family and social support both from a practical and from an emotional perspective, coping style, and work schedule management. Conclusions: These results suggest that relations with healthcare providers should be supported, especially immediately after diagnosis and after surgery. Support to self-management after surgery and at the beginning of radiation therapy treatment also constitutes a priority. The adoption of a personalized approach from the beginning of prostate cancer care flow may promote patient empowerment, overcoming the aforementioned needs and mobilizing resources. The social network represents an important resource that could be integrated in interventions. These considerations will be taken into account in the design of a cancer self-management platform aiming to increase patients' empowerment.

Project description:BackgroundPatients as active partners in their personal healthcare are key drivers to reducing costs, securing an effective usage of resources, and ensuring patient-provider satisfaction. Even though these benefits are acknowledged, a theoretical framework for the plethora of concepts used in this context, such as patient engagement, patient empowerment, or patient involvement is missing. Furthermore, the heterogeneous or synonymous usage of these terms leads to miscommunication, missing standard conceptual measures, and a deficiency in theory building and testing. Our objective is to show what the relationships and distinctions between concepts focussing on patients as active partners in their personal healthcare are.MethodsA systematic literature review was conducted to consolidate terms related to patients' having an active role in their healthcare. From 442 articles screened in PubMed, a final set of 17 papers was included. Any articles conceptualising or presenting relationships between the concepts were included. Information was synthesised, and contradictions were unravelled systematically. The concepts and their relationships are structured and represented by employing a concept map.ResultsPatient-centredness is a concept dominantly influenced by health care providers and can enhance patients' competencies, attitudes, and behaviours towards their personal healthcare. Enabling patients to become more empowered can ultimately lead to their greater involvement and engagement. Fostering an active role of patients can also increase their adherence to the care pathway. In general, patient engagement seems to be the most conclusive and furthest developed concept in terms of turning patients into active partners in their personal healthcare.ConclusionsWe plead for a stricter demarcation and therefore a terminological standardisation of the terms in the future to avoid further ambiguity and miscommunication. The concept map presents a basis for a uniform understanding and application of the concepts. Through a comprehensive understanding of the terms and their dimensions, relationships between the concepts can be utilised, measures can be derived, and theory building and testing can be enhanced, leading to better acceptance and utilisation of concepts in healthcare services. Furthermore, patient engagement is presented to be the most conclusive and furthest developed concept in the subject area.

Dataset Information

Defining Empowerment and Supporting Engagement Using Patient Views From the Citizen Health Information Portal: Qualitative Study.

Publications

Defining Empowerment and Supporting Engagement Using Patient Views From the Citizen Health Information Portal: Qualitative Study.

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