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A case study of stakeholder perceptions of patient held records: the Patients Know Best (PKB) solution.

ABSTRACT: Introduction:Patients Know Best (PKB) provides a patient portal with integrated, patient-controlled digital care records. Patient-controlled personal health records facilitate coordinated management of chronic disease through improved communications among, and about, patients across professional and organisational boundaries. An NHS foundation trust hospital has used PKB to support self-management in patients with inflammatory bowel disease; this paper presents a case study of usage. Methods:The stakeholder empowered adoption model provided a framework for consulting variously placed stakeholders. Qualitative interviews with clinical stakeholders and a patient survey. Results:Clinicians reported PKB to have enabled a new way of managing stable patients, this facilitated clinical and cost effective use of specialist nurses; improved two-way communications, and more optimal use of outpatient appointments and consultant time. The portal also facilitated a single, rationalised pathway for stable patients, enabling access to information and pro-active support. For patients, the system was a source of support when unwell and facilitated improved communication with specialists. Three main barriers to adoption were identified; these related to concerns over security, risk averse attitudes of users and problems with data integration. Conclusions:Patient-controlled personal health records offer significant potential in supporting self-management. Digital connection to healthcare can help patients to understand their condition better and access appropriate, timely clinical advice.

SUBMITTER: Bidmead E

PROVIDER: S-EPMC6001208 | biostudies-literature | 2016 Jan-Dec

REPOSITORIES: biostudies-literature

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A case study of stakeholder perceptions of patient held records: the Patients Know Best (PKB) solution.

Bidmead Elaine E Marshall Alison A

Digital health 20160101

<h4>Introduction</h4>Patients Know Best (PKB) provides a patient portal with integrated, patient-controlled digital care records. Patient-controlled personal health records facilitate coordinated management of chronic disease through improved communications among, and about, patients across professional and organisational boundaries. An NHS foundation trust hospital has used PKB to support self-management in patients with inflammatory bowel disease; this paper presents a case study of usage.<h4> ...[more]

PMID: 29942567

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Project description:IntroductionInvolving patients in decision making adds value in the context of pharmacovigilance (PV). This added value goes beyond participation in spontaneous reporting systems for adverse drug reactions. However, there is a gap between allowing patients to report and actual patient involvement. Views regarding best practices from regulators, patient organizations and pharmaceutical companies could help increase and improve patient involvement in PV.ObjectiveThe aim of this study was to investigate the factors contributing to best practices for patient involvement in PV and to develop a definition of patient involvement based on a qualitative multistakeholder study across Europe.MethodsA literature review was conducted to map the field of study and obtain insights for the elaboration of an interview guide. Subsequently, patient representatives, members of the pharmaceutical industry and regulators were invited to participate in interviews. These interviews were analyzed using NVIVO® software and employing reflective thematic analysis.ResultsA total of 20 interviews were conducted with representatives at both the national and European levels. The best practices identified were engagement from the start, face-to-face communication, a full circle of feedback, same-level partners, structured involvement and guidelines, establishing common goals, patient education and empowerment, and developing trust and balance. These activities can be implemented via deep collaboration among stakeholders. A definition of patient involvement was constructed in accordance with the input of all stakeholder groups, which reflects the involvement of all types of patients at all levels of the decision-making process.ConclusionIn this study, we developed a definition for patient involvement based on qualitative interviews. The factors contributing to best practices for patient involvement were mentioned across stakeholder groups and aimed to stimulate patient involvement in PV. Patients are eager to become equal partners and to engage effortlessly in the same manner as other stakeholders.

Project description:BackgroundUnderstanding stakeholders' (parents', communities' and health workers') perspectives of communication about childhood vaccination, including their preferences for its format, delivery and content, is an important step towards designing better communication strategies and ensuring more informed parents. Our objectives were to explore stakeholders' views, experiences and preferences for childhood vaccination communication in Cameroon.MethodsIn 2014, in the Central and North West Regions of Cameron, we gathered qualitative data for our case study using the following methods: semi structured interviews; observations and informal conversations during routine immunization clinics and three rounds of the National Polio Immunization Campaign; document analysis of reports and mass media communications about vaccination; and a survey of parents. We conducted a thematic analysis of the qualitative data to identify themes relating to views, experiences and perceptions of vaccination information and its delivery. Survey data were analysed using simple descriptive statistics.ResultsAll of the parents interviewed felt that vaccinating their child was important, and trusted the information provided by health workers. However, many parents wanted more information. Parents did not always feel that they could ask questions during vaccination appointments. All participants felt that health workers and vaccination clinics were important sources of information. Social mobilisation activities such as door-to-door visits and announcements during religious services were important and accepted ways of communicating information, especially during vaccination campaigns. Information communicated through mass media and text messages was also seen as important. In general, stakeholders believed that more consistent messaging about routine vaccination through community channels would be helpful to remind parents of the importance of routine vaccination during ongoing rounds of vaccination campaigns against polio.ConclusionsThis study confirms that parents regard information about childhood vaccination as important, but that health services need to be organized in ways that prioritize and facilitate communication, particularly about routine vaccination.

Project description:BackgroundPatient-centered care (PCC) offers opportunities for African health systems to improve quality of care. Nonetheless, PCC continually faces implementation challenges. In 2015, Uganda introduced PCC as a concept in their national quality improvement guidelines. In order to investigate whether and how this is implemented in practice, this study aims to identify relevant stakeholders' views on the current quality of primary health care services and their understanding of PCC. This is an important step in understanding how the concept of PCC can be implemented in a resource constrained, sub-Saharan context like Uganda.MethodsThis qualitative study was conducted in Uganda at national, district and facility level, with a focus on three public and three private health centres. Data collection consisted of in-depth interviews (n = 49); focus group discussions (n = 7); and feedback meetings (n = 14) across the four main categories of stakeholders identified: patients/communities, health workers, policy makers and academia. Interviews and discussions explored stakeholder perceptions on the interpersonal aspects of quality primary health care and meanings attached to the concept of PCC. A content analysis of Ugandan policy documents mentioning PCC was also conducted. Thematic content analysis was conducted using NVivo 11 to organize and analyze the data.Findings and conclusionWhile Ugandan stakeholder groups have varying perceptions of PCC, they agree on the following: the need to involve patients in making decisions about their health, the key role of healthcare workers in that endeavor, and the importance of context in designing and implementing solutions. For that purpose, three avenues are recommended: Firstly, fora that include a wide range of stakeholders may offer a powerful opportunity to gain an inclusive vision on PCC in Uganda. Secondly, efforts need to be made to ensure that improved communication and information sharing-important components of PCC-translate to actual shared decision making. Lastly, the Ugandan health system needs to strengthen its engagement of the transformation from a community health worker system to a more comprehensive community health system. Cross-cutting the entire analysis, is the need to address, in a culturally-sensitive way, the many structural barriers in designing and implementing PCC policies. This is essential in ensuring the sustainable and effective implementation of PCC approaches in low- and middle-income contexts.

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A case study of stakeholder perceptions of patient held records: the Patients Know Best (PKB) solution.

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A case study of stakeholder perceptions of patient held records: the Patients Know Best (PKB) solution.

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