scholarly journals Data and information needs of policymakers for palliative cancer care: a multi-country qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Eve Namisango ◽  
Lauren Ramsey ◽  
Adlight Dandadzi ◽  
Kehinde Okunade ◽  
Bassey Ebenso ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Data Quality ◽  
Cancer Care ◽  
Information Needs ◽  
Core Competencies ◽  
Data Access ◽  
Evaluation Framework ◽  
Data Availability ◽  
Measure Evaluation

Abstract Background Despite regional efforts to address concerns regarding the burden of advanced cancer in Africa, urgent attention is still required. Widespread issues include late symptom presentation, inaccessibility of palliative care services, limited resources, poor data quality, disparity in data availability, and lack of stakeholder engagement. One way of helping to address these issues is by understanding and meeting the data and information needs of policymakers in palliative cancer care. Aims To explore the views of policymakers regarding data availability, data gaps and preferred data formats to support policy and decision making for palliative cancer care in Nigeria, Uganda and Zimbabwe. Methods A secondary analysis of interview data collected as part of a cross-sectional qualitative study that aimed to explore the data and information needs of patients, policymakers and caregivers in Nigeria, Uganda and Zimbabwe. Framework analysis, guided by the MEASURE evaluation framework, was used to qualitatively analyse the data. Results Twenty-six policymakers were recruited. The policymakers data and information concerns are aligned to the MEASURE evaluation framework of data and information use and include; assessing and improving data use (e.g. low prioritisation of cancer); identifying and engaging the data user (e.g. data processes); improving data quality (e.g. manual data collection processes); improving data availability (e.g. the accessibility of data); identifying information needs (e.g. what is ‘need to know’?); capacity building in core competencies (e.g. skills gaps); strengthening organisational data demand and use (e.g. policy frameworks); monitoring, evaluating and communicating of data demand and use (e.g. trustworthiness of data). Conclusions We present evidence of data sources, challenges to their access and use, guidance on data needs for policymakers, and opportunities for better engagement between data producers, brokers and users. This framework of evidence should inform the development of strategies to improve data access and use for policy and decision making to improve palliative cancer services in participating countries with relevance to the wider region.

scholarly journals What are the opportunities for cancer care and related research in primary care? A qualitative study of the views of patients, carers, and practice staff

2019 ◽  
Vol 69 (suppl 1) ◽  
pp. bjgp19X703505
Author(s):  
Joseph Clark ◽  
Elvis Amoakwa ◽  
John Blenkinsopp ◽  
Florence Reedy ◽  
Miriam Johnson
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Qualitative Study ◽  
Focus Groups ◽  
Cancer Care ◽  
Information Needs ◽  
Controlled Trial ◽  
Unmet Need ◽  
Care Staff ◽  
Trial Participation

BackgroundResearch to identify the role of primary care in cancer care is important. However, trials in primary care are difficult.AimTo understand how patients, families, and primary care clinicians view their role in cancer care and identify opportunities for cancer primary care research.MethodQualitative study embedded within a feasibility cluster randomised controlled trial of a primary care based needs assessment intervention. The Supportive Cancer Needs Survey (SCNS) was the main outcome. In-depth interviews with patients/carers and focus groups with primary care staff explored views on cancer care and trial participation. Data were recorded, transcribed verbatim, and analysed thematically by three independent researchers.ResultsFifteen cancer patients and three carers were interviewed and four focus groups (n = 11) were conducted. Three themes were generated satisfaction with current care; key time-points for improved cancer care; and information and research. Satisfaction with current care among patients was high in spite of 72% reporting at least one moderate-high unmet need at baseline. Most patients undergoing cancer treatment were unsure when to access primary care. Patients and carers highly valued proactive contact from their practice following diagnosis though this was uncommon. Post-oncology discharge was a key time-point for information needs and support for patients. Patients were reluctant to consider palliative care in spite of palliative care needs. Some felt therapeutic benefit from completing study measures.ConclusionPatients are satisfied with cancer primary care despite unmet needs. Palliative care is poorly understood by many who may benefit. Research participation may benefit some patients.

scholarly journals Understanding data and information needs for palliative cancer care to inform digital health intervention development in Nigeria, Uganda and Zimbabwe: protocol for a multicountry qualitative study

BMJ Open ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. e032166 ◽  
Author(s):  
Kehinde Okunade ◽  
Kennedy Bashan Nkhoma ◽  
Omolola Salako ◽  
David Akeju ◽  
Bassey Ebenso ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Cancer Care ◽  
Information Needs ◽  
Research Council ◽  
Digital Health ◽  
Health Interventions ◽  
Sub Saharan Africa ◽  
Institutional Review Boards ◽  
National Council ◽  
Framework Analysis

IntroductionPalliative care is a clinically and cost‐effective component of cancer services in sub-Saharan Africa (SSA). Despite the significant need for palliative cancer care in SSA, coverage remains inadequate. The exploration of digital health approaches could support increases in the quality and reach of palliative cancer care services in SSA. However, there is currently a lack of any theoretical underpinning or data to understand stakeholder drivers for digital health components in this context. This project addresses this gap through engaging with key stakeholders to determine data and information needs that could be supported through digital health interventions.Methods and analysisThis is a multicountry, cross-sectional, qualitative study conducted in Nigeria, Uganda and Zimbabwe. In-depth interviews will be conducted in patients with advanced cancer (n=20), caregivers (n=15), health professionals (n=20) and policy-makers (n=10) in each of the three participating countries. Data from a total of 195 interviews will transcribed verbatim and translated into English before being imported into NVivo software for deductive framework analysis. The analysis will seek to understand the acceptability and define mechanisms of patient-level data capture and usage via digital technologies.Ethics and disseminationEthics approvals have been obtained from the Institutional Review Boards of University of Leeds (Ref: MREC 18–032), Research Council of Zimbabwe (Ref: 03507), Medical Research Council of Zimbabwe (Ref: MRCZ/A/2421), Uganda Cancer Institute (Ref: 19–2018), Uganda National Council of Science and Technology (Ref: HS325ES) and College of Medicine University of Lagos (Ref: HREC/15/04/2015). The project seeks to determine optimal mechanisms for the design and development of subsequent digital health interventions to support development, access to, and delivery of palliative cancer care in SSA. Dissemination of these findings will occur through newsletters and press releases, conference presentations, peer-reviewed journals and social media.Trial registration numberISRCTN15727711

Patient engagement on claims-registry reports of cost and quality.

2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 159-159
Author(s):  
Karma L. Kreizenbeck ◽  
Catherine R. Fedorenko ◽  
Julia Rose Walker ◽  
Mikael Anne Greenwood-Hickman ◽  
Laura Panattoni ◽  
...  
Keyword(s):  
Decision Making ◽  
Cancer Care ◽  
Information Needs ◽  
Cancer Surveillance ◽  
A Value ◽  
Period 2 ◽  
Episodes Of Care ◽  
Working Groups ◽  
Eol Care ◽  
Registry Database

159 Background: Moving cancer care towards a value framework requires patients, providers, and payers to weigh cost, quality, and outcomes in decision-making. Many efforts are underway to help providers and payers make value decisions, but little has been developed for patients. Our regional value in cancer care effort used a claims-registry database to develop quality and cost reports aiming to provide actionable data to all stakeholders. Methods: Reports were generated using cancer registry records for Western WA from 2007-2015 linked with claims from two regional commercial insurers. Patients were presented quality reports on regionally prioritized metrics and the 2012 ASCO Choosing Wisely guidelines on breast cancer surveillance and EOL care. Patients also reviewed cost reports for episodes of care (diagnosis, treatment, end-of-life (EOL)) and out-of-pocket (OOP) cost estimates. Feedback stemmed from 1) stakeholder meetings over a 2-year period, 2) working groups of patients, payers and providers, and 3) an annual regional meeting on value in cancer care. Results: In total, 13 patients provided feedback at one or more outreach event. See table. Conclusions: Reports from a claims-registry database may not support the information needs of patients for care decision-making or representing “value”. Patients desired understanding more about patients “like them” for decision-making. [Table: see text]

scholarly journals Evaluasi Kesiapan Implementasi Infrastruktur Data Spasial untuk Manajemen Penanggulangan Bencana

2018 ◽  
Vol 2017 (1) ◽  
Author(s):  
Herlina ◽  
Sumarno ◽  
Indrianawati
Keyword(s):  
Decision Making ◽  
Disaster Management ◽  
Spatial Data ◽  
Data Access ◽  
Spatial Data Infrastructure ◽  
Data Availability ◽  
Geospatial Information ◽  
Data Infrastructure ◽  
Ease Of Access ◽  
Interview Questionnaire

ABSTRAK Akses data spasial yang cepat dan akurat mempunyai peranan yang penting dalam pengambilan keputusan untuk manajemen penanggulangan bencana. Infrastruktur Data Spasial (IDS) merupakan suatu cara untuk memudahkan pengguna untuk mengakses data spasial secara konsisten, mudah, dan aman. Dengan kata lain, IDS dapat meningkatkan ketersediaan data, kemudahan dalam akses, dan implementasi data spasial dalam pengambilan keputusan. Dalam hal manajemen penanggulangan bencana, BPBD dan stakeholder kebencanaan Kabupaten Bandung belum mengimplementasikan IDS kebencanaan. Tujuan penelitian ini adalah menentukan model IDS kebencanaan dan mengevaluasi kesiapan implementasi dalam manajemen penanggulangan bencana di Kabupaten Bandung. Metode yang digunakan dalam penelitian adalah penentuan model IDS kebencanaan yang mengacu pada model IDS yang dirumuskan oleh Rajabifard kemudian didetailkan dengan indikator penilaian IDS yang dikeluarkan Badan Informasi Geospasial tahun 2016. Pengambilan data dilakukan pada 18 stakeholder kebencanaan Kabupaten Bandung dengan wawancara, kuesioner, dan penilaian melalui website. Hasil evaluasi dari kesiapan implementasi IDS kebencanaan Kabupaten Bandung adalah 45,8%. Kata kunci: Infrastruktur Data Spasial, Manajemen Penanggulangan Bencana, Kabupaten Bandung ABSTRACT Fast and accurate spatial data access has an important role in decision making for disaster management. Spatial Data Infrastructure (SDI) is a way to facilitate the users to access spatial data consistently, easily, and safety. In the case, SDI can improve data availability, ease of access and implementation of spatial data for decision making. In disaster management, BPBD and disaster stakeholders in Bandung District have not implemented SDI of disaster. The objective of this study is to determine the SDI model of disaster and evaluate the readiness of implementation in disaster management in Bandung District. The method used in this study is determining SDI model of disaster, referred to IDS model which is formulated by Rajabifard, and then the SDI model of disaster is detailed by SDI assessment indicator issued by Geospatial Information Agency (2016). The data collection has been taken on 18 disaster stakeholders in Bandung District with interview, questionnaire, and assessment through the website. The evaluation result of the readiness of implementation the SDI of disaster in Bandung District is 45.8%. Keywords: Spatial Data Infrastructure, Disaster Management, Bandung District

Understanding the patient experience of cancer treatment in Ontario, Canada: A qualitative study.

2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 225-225
Author(s):  
Erica Bridge ◽  
Lesley Gotlib Conn ◽  
Suman Dhanju ◽  
Simron Singh ◽  
Lesley Moody
Keyword(s):  
Qualitative Study ◽  
Cancer Treatment ◽  
Patient Experience ◽  
Care Provider ◽  
Cancer Care ◽  
Information Needs ◽  
Qualitative Content Analysis ◽  
Oncology Patient ◽  
Patient Centred Care ◽  
Ambulatory Oncology

225 Background: In cancer care, patient experience is most often measured quantitatively. However, this approach has limitations in understanding the entire patient experience. Qualitative methods provide an opportunity to understand self reported and more complex issues most important to patients and their family members. This qualitative study explores the patient experience of outpatient cancer treatment throughout Ontario, Canada. Methods: Qualitative content analysis was done by two researchers using data from the annual Ambulatory Oncology Patient Satisfaction Survey (AOPSS) from 2013-15. The AOPSS is a retrospective, paper-based, mailed survey, designed to capture the experiences of patients who are currently receiving cancer treatment or who have received cancer treatment within the previous six months. Patients surveyed were asked “Is there anything else you would like to tell us about your cancer care services?” The National Research Corporation of Canada’s eight dimensions of patient-centred care was used to guide the analysis. Results: 5,391 patients responded to the open-ended question. Demographic information includes: gender, age, education level and disease site. 7,328 coded responses were generated, of which 3,658 (49.9%) were related to eight dimensions of patient-centred care with accompanying sub-dimensions: patients’ preferences (23.5%): dignity and respect; preferences and decision-making; care provider behaviours; emotional support (21.5%): caring, compassion and comfort; anxiety and stress; resources; and sensitive diagnosis; coordination of care (15.8%): care provider and treatment coordination; wait times; information and education (15.7%): patient-care provider communication; information needs; care provider knowledge and skills; access (9.4%): centre location; transportation and accommodation; system; parking; continuity and transition (8.1%): centre personnel; continuity between departments; continuity in the community; discharge; physical comfort (5.1%): environment; pain management and family and friends (0.8%). Conclusions: Qualitative analysis is an effective tool to capture patient experience on a population level.

scholarly journals How are decisions made in cancer care? A qualitative study using participant observation of current practice

BMJ Open ◽  
2017 ◽  
Vol 7 (9) ◽  
pp. e016360 ◽  
Author(s):  
Pola Hahlweg ◽  
Martin Härter ◽  
Yvonne Nestoriuc ◽  
Isabelle Scholl
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Shared Decision Making ◽  
Cancer Care ◽  
Qualitative Content Analysis ◽  
Participant Observation ◽  
Treatment Decisions ◽  
Shared Decision ◽  
Field Notes ◽  
Made In

ObjectivesShared decision-making has continuously gained importance over the last years. However, few studies have investigated the current state of shared decision-making implementation in routine cancer care. This study aimed to investigate how treatment decisions are made in routine cancer care and to explore barriers and facilitators to shared decision-making using an observational approach (three independent observers). Furthermore, the study aimed to extend the understanding of current decision-making processes beyond the dyadic physician–patient interaction.DesignCross-sectional qualitative study using participant observation with semistructured field notes, which were analysed using qualitative content analysis as described by Hsieh and Shannon.Setting and participantsField notes from participant observations were collected at n=54 outpatient consultations and during two 1-week-long observations at two inpatient wards in different clinics of one comprehensive cancer centre in Germany.ResultsMost of the time, either one physician alone or a group of physicians made the treatment decisions. Patients were seldom actively involved. Patients who were ‘active’ (ie, asked questions, demanded participation, opposed treatment recommendations) facilitated shared decision-making. Time pressure, frequent alternation of responsible physicians and poor coordination of care were the main observed barriers for shared decision-making. We found high variation in decision-making behaviour between different physicians as well as the same physician with different patients.ConclusionMost of the time physicians made the treatment decisions. Shared decision-making was very rarely implemented in current routine cancer care. The entire decision-making process was not observed to follow the principles of shared decision-making. However, some aspects of shared decision-making were occasionally incorporated. Individual as well as organisational factors were found to influence the degree of shared decision-making. If future routine cancer care wishes to follow the principles of shared decision-making, strategies are needed to foster shared decision-making in routine cancer care.

Enhancing data quality to mine credible patterns

2021 ◽  
pp. 016555152110136
Author(s):  
Muhammad Imran ◽  
Adnan Ahmad
Keyword(s):  
Decision Making ◽  
Social Media ◽  
Data Quality ◽  
Positive Impact ◽  
Detection Algorithm ◽  
Evaluation Framework ◽  
Decision Making Process ◽  
Proposed Model ◽  
Strategic Goals

The importance of big data is widely accepted in various fields. Organisations spend a lot of money to collect, process and mine the data to identify patterns. These patterns facilitate their future decision-making process to improve the organisational performance and profitability. However, among discovered patterns, there are some meaningless and misleading patterns which restrict the effectiveness of decision-making process. The presence of data discrepancies, noise and outliers also impacts the quality of discovered patterns and leads towards missing strategic goals and objectives. Quality inception of these discovered patterns is vital before utilising them in making predictions, decision-making process or strategic planning. Mining useful and credible patterns over social media is a challenging task. Often, people spread targeted content for character assassination or defamation of brands. Recently, some studies have evaluated the credibility of information over social media based on users’ surveys, experts’ judgement and manually annotating Twitter tweets to predict credibility. Unfortunately, due to the large volume and exponential growth of data, these surveys and annotation-based information credibility techniques are not efficiently applicable. This article presents a data quality and credibility evaluation framework to determine the quality of individual data instances. This framework provides a way to discover useful and credible patterns using credibility indicators. Moreover, a new Twitter bot detection algorithm is proposed to classify tweets generated by Twitter bots and real users. The results of conducted experiments showed that the proposed model generates a positive impact on improving classification accuracy and quality of discovered patterns.

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