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

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

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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

British Journal of General Practice ◽

10.3399/bjgp19x703505 ◽

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.

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Physical activity maintenance and digital health interventions in people with rheumatoid arthritis: a qualitative study

Physiotherapy ◽

10.1016/j.physio.2018.11.263 ◽

2019 ◽

Vol 105 ◽

pp. e21-e22

Author(s):

R. Simmons ◽

H. Lempp ◽

J. Galloway ◽

H. Oldrieve ◽

L.M. Bearne

Keyword(s):

Rheumatoid Arthritis ◽

Physical Activity ◽

Qualitative Study ◽

Digital Health ◽

Health Interventions ◽

Physical Activity Maintenance

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Stakeholder perspectives and requirements to guide the development of digital technology for palliative cancer services: a multi-country, cross-sectional, qualitative study in Nigeria, Uganda and Zimbabwe

BMC Palliative Care ◽

10.1186/s12904-020-00694-y ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Kennedy Bashan Nkhoma ◽

Bassey Ebenso ◽

David Akeju ◽

Samuel Adejoh ◽

Michael Bennett ◽

...

Keyword(s):

Palliative Care ◽

Qualitative Study ◽

Advanced Cancer ◽

Digital Technology ◽

Technology Use ◽

Cancer Care ◽

Digital Health ◽

Digital Technologies ◽

Cross Sectional ◽

Improve Access

Abstract Introduction Coverage of palliative care in low and middle-income countries is very limited, and global projections suggest large increases in need. Novel approaches are needed to achieve the palliative care goals of Universal Health Coverage. This study aimed to identify stakeholders’ data and information needs and the role of digital technologies to improve access to and delivery of palliative care for people with advanced cancer in Nigeria, Uganda and Zimbabwe. Methods We conducted a multi-country cross-sectional qualitative study in sub-Saharan Africa. In-depth qualitative stakeholder interviews were conducted with N = 195 participants across Nigeria, Uganda and Zimbabwe (advanced cancer patients n = 62, informal caregivers n = 48, health care professionals n = 59, policymakers n = 26). Verbatim transcripts were subjected to deductive and inductive framework analysis to identify stakeholders needs and their preferences for digital technology in supporting the capture, transfer and use of patient-level data to improve delivery of palliative care. Results Our coding framework identified four main themes: i) acceptability of digital technology; ii) current context of technology use; iii) current vision for digital technology to support health and palliative care, and; iv) digital technologies for the generation, reporting and receipt of data. Digital heath is an acceptable approach, stakeholders support the use of secure data systems, and patients welcome improved communication with providers. There are varying preferences for how and when digital technologies should be utilised as part of palliative cancer care provision, including for increasing timely patient access to trained palliative care providers and the triaging of contact from patients. Conclusion We identified design and practical challenges to optimise potential for success in developing digital health approaches to improve access to and enhance the delivery of palliative cancer care in Nigeria, Uganda and Zimbabwe. Synthesis of findings identified 15 requirements to guide the development of digital health approaches that can support the attainment of global health palliative care policy goals.

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Key components and critical factors for developing a telehealth business framework: a qualitative study

BMC Medical Informatics and Decision Making ◽

10.1186/s12911-021-01707-3 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Farnia Velayati ◽

Haleh Ayatollahi ◽

Morteza Hemmat ◽

Reza Dehghan

Keyword(s):

Qualitative Study ◽

Health Care Services ◽

Success Factors ◽

Digital Health ◽

Economic Benefits ◽

Critical Factors ◽

Structured Interviews ◽

Framework Analysis ◽

Equal Distribution ◽

Business Framework

Abstract Background Telehealth technology and related products can help to solve the problems associated with providing health care services and equal distribution of resources. However, in order to run a telehealth business successfully, key components and critical factors need to be taken into account. A telehealth business framework can provide a rich understanding of these components and factors. Therefore, the present study aimed to identify the key components and critical factors for developing a telehealth business framework from the experts’ perspectives. Methods The present qualitative study was conducted in 2020. The participants were 22 experts in the fields of medical informatics, health information management, telemedicine, telehealth, health entrepreneurship, health insurance, and digital health start-ups. In depth semi-structured interviews were conducted to collect data, and the data were analyzed using framework analysis. Results Four main themes derived from data analysis. The themes included key components for developing a telehealth business framework, success factors, challenges, and barriers of a telehealth business. Overall, the results indicated that the key components in a telehealth business framework included created value, key resources, key activities, key partners, licenses and permissions, product pricing, revenue, marketing, supporting services, and getting feedback from customers. Although receiving support from different individuals and organizations as well as economic benefits of telehealth services may consider as success factors, there are a number of challenges and barriers which should be taken into account. Otherwise, these factors may hinder the success of a telehealth business. Conclusions The development of a telehealth business framework might be an important step towards developing a more complete business plan, facilitating the commercialization of telehealth products, and providing a solution for product sustainability in a competitive market. In the current study, the key components and critical factors for developing a telehealth business framework were identified; however, further research is needed to explore how these components and factors can be helpful in developing business plans and running a successful telehealth business.

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Supportive care interventions for people with cancer assisted by digital technology: A systematic review (Preprint)

10.2196/preprints.24722 ◽

2020 ◽

Author(s):

Michael Marthick ◽

Deborah McGregor ◽

Jennier A. Alison ◽

Birinder Cheema ◽

Haryana Dhillon ◽

...

Keyword(s):

Systematic Review ◽

Supportive Care ◽

Randomized Controlled Trials ◽

Outcome Measures ◽

Cancer Care ◽

Digital Health ◽

Health Interventions ◽

Controlled Trials ◽

Supportive Cancer Care ◽

Randomized Controlled

BACKGROUND While relatively new, digital health interventions are demonstrating rapid growth due to their ability to facilitate access and overcome issues of location, time, health status, and most recently, the impact of a major pandemic. With the increased uptake of digital technologies, digital health has the potential to improve the provision of supportive cancer care. OBJECTIVE The purpose of this systematic review was to evaluate digital health interventions in supportive cancer care. METHODS Published literature between 2000 and 2020 was systematically searched in Medline, PubMed, Embase, PsycINFO, Cochrane Central Register of Controlled Trials and Scopus. Eligible publications were randomized controlled trials (RCTs) of clinician led digital health interventions to support adult cancer patients. Included interventions were determined by applying a digital health conceptual model. Studies were appraised for quality using the revised Cochrane risk of bias tool. RESULTS Twenty randomized controlled trials met the inclusion criteria for analysis. Interventions varied by duration, frequency, degree of technology use and applied outcome measures. Interventions targeting a single tumour stream, predominantly breast cancer, and studies involving the implementation of remote symptom monitoring dominated results. In most studies the digital intervention resulted in significant positive outcomes in patient reported symptoms, levels of fatigue and pain, health-related quality of life, functional capacity, and/or depression levels compared to control. CONCLUSIONS Digital health interventions are helpful and effective for the supportive care of patients with cancer. There is a need for higher quality research. Future endeavours could focus on use of valid, standardised outcome measures, maintenance of methodological rigour, and strategies to improve patient and health professional engagement in the design and delivery of supportive digital health interventions. CLINICALTRIAL

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

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.8_suppl.225 ◽

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.

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

BMC Medical Informatics and Decision Making ◽

10.1186/s12911-021-01555-1 ◽

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.

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