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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: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.

Project description:BackgroundContinuity of care is important for child well-being in all settings where postnatal retention of mother-infant pairs in care remains a challenge. This analysis reports on completeness of patient-held infant Road to Health Booklets (RtHBs), amongst HIV exposed and unexposed infants during the first two years after the RtHB was launched country-wide in South Africa.MethodsSecondary data were analysed from two nationally representative, cross-sectional surveys, conducted in 2011-12 and 2012-13. These surveys aimed to measure early effectiveness of the national programme for preventing vertical HIV transmission. Participants were eligible for this analysis if they were 4-8 weeks old, receiving their six-week immunisation, not needing emergency care and had their RtHBs reviewed. Caregivers were interviewed and data abstracted from RtHBs. RtHB completeness across both surveys was defined as the proportion of RtHBs with any of the following indicators recorded: infant birth weight, BCG immunisation, maternal syphilis results and maternal HIV status. A partial proportional odds logistic regression model was used to identify factors associated with completeness. Survey sampling weights were included in all analyses.ResultsData from 10?415 (99.6%) participants in 2011-12 and 9529 (99.2%) in 2012-13 were analysed. Overall, recording of all four indicators increased from 23.1% (95% confidence interval (CI) ?=?22.2-24.0) in 2011-12 to 43.3% (95% CI?=?42.3-44.4) in 2012-13. In multivariable models, expected RtHB completeness (ie, recording all four indicators vs recording of <4 indicators), was significantly (P<0.05) associated with survey year, marital status, socio-economic status, maternal antenatal TB screening, antenatal infant feeding counselling, delivery at a clinic or hospital and type of birth attendant.ConclusionsRoutine patient-held infant health RtHB, a critical tool for continuity of care in high HIV/TB prevalence settings, was poorly completed, with less than 50% of the RtHB showing expected completeness. However, government efforts for improved usage of the booklet were evidenced by the near doubling of completeness from 2011 to 2013. Education about its importance and interventions aiming at optimising its use without violating user privacy should be continued.

Project description:IntroductionIndia accounted for more neonatal deaths (estimated at 696 000) than any other country, as of 2015. Of these , most neonatal deaths due to infections can be attributed to pneumonia which accounts for 16% of all neonatal mortalities (2010). Despite simple, inexpensive case management strategies being available, pneumonia continues to cause significant mortality and morbidity among neonates. Understanding the perceptions and experiences of stakeholders of neonatal care can help find solutions to barriers to care and design tailored strategies for controlling neonatal pneumonia.Methods and analysisA pan-India qualitative study will be conducted. Participants include healthcare providers, programme officers, academicians, representatives of non-governmental organisations/bilateral agencies and policy makers. They will be recruited purposively from rural and urban, public and private, and facility and community healthcare settings across six Indian regions. Within each region, a minimum of one state will be selected. Districts will be based on neonatal mortality indicators, and will be subject to feasibility at the time of conducting the study. We plan to conduct in-depth interviews (IDI) and focus group discussions focusing on (a) burden, (b) risk factors, (c) case management, (d) treatment guidelines, (e) barriers to case management, (f) recommendations. The number of interviews will depend on the information saturation. Interviews will be audio-recorded with prior written consent and transcribed verbatim. Principles of thematic analysis will be applied for qualitative data analysis using R package for Qualitative Data Analysis (RQDA).Ethics and disseminationThe protocol has been approved by the Health Ministry Screening Committee, Government of India and the Institutional Ethics Committee at the host institution. Confidentiality and privacy of the participants will be maintained. The findings of the study will be shared with all stakeholders of this research including the participants. Knowledge dissemination workshops will be conducted to ultimately transfer the evidence tailored to the stakeholders' need.

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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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