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Table 2 Summary of the characteristics and data used in the studies with NGO clinical data (n=13)

From: Repurposing NGO data for better research outcomes: a scoping review of the use and secondary analysis of NGO data in health policy and systems research

Author

Country

Name of NGO (author/co-author)

NGO data (aadditional NGO and/or other data used in the study, including data collection for the purposes of the study)

Study population

Outcomes using the NGO data

Strengths and limitations of the data reported in the article)

Bini et al., Pharmacoepidemiological Data from Drug Dispensing Charities as a Measure of Health Patterns in a Population not Assisted by the Italian National Health Service [60].

Italy

Banco Farmaceutico

Drug dispensation records (includes gender, macro-region of birth, age, duration of the illness)

Low income population not assisted by the Italian National Health Service

Highlighted differences in health between those that do and do not receive Italian NHS assistance

Strengths: large dataset (87,550 subjects); complete data

Limitations: individual patient data not provided so analysis by group not possible

Carlson et al., Inequitable Access to Timely Cleft Palate Surgery in Low- and Middle-Income Countries [61].

Ghana, Ethiopia, Democratic Republic of Congo, and Madagascar, China, India, Nicaragua, Bolivia, Paraguay, Peru, Mexico

Operation Smile (co-author)

Patient records (includes gender, age, diagnosis, proposed surgical repair, and documented operation)

People without access to cleft palate/lip in low and middle income countries

Highlighted inequalities in access to surgical care

Strengths: comprehensive initial consultation so could select a sample with specific characteristics

Limitations: no high income group comparison data

Cunningham et al., Occupational Therapy to Facilitate Physical Activity and Enhance Quality of Life for Individuals with Complex Neurodisability [62].

UK

Royal Hospital for Neuro-disability (authors)

Patient and therapist records

Individuals with complex neurodisability and limited physical activity

Demonstrates the role of occupational therapists and meaningful physical activity for people with neurodisabilities

Strengths: none reported

Limitations: none reported

Deboutte et al., Cost-effectiveness of caesarean sections in a post-conflict environment: a case study of Bunia, Democratic Republic of the Congo [63].

Democratic Republic of Congo

NGO name not reported

Patient records (includes maternal deaths and obstetric care)a

People with limited access to obstetric care in a conflict-affected country

Highlighted challenges to service provision during transition from NGO to national health system healthcare, with the need for additional support from NGOs to ensure equitable access

Strengths: adequate data to compare the obstetric characteristics of women who lived in the same neighbourhood and delivered around the same time (e.g. caesarean section versus virginal delivery)

Limitations: limited generalisability of the findings to other crisis situations e.g. sudden-onset natural disasters

Gurung et al., Large-scale STI services in Avahan improve utilization and treatment seeking behaviour amongst high-risk groups in India: an analysis of clinical records from six states [64].

India

Avahan (delivered by a network of NGOs) (co-authors)

Individual clinical monitoring data (includes sex, age, years in sex work, symptoms, diagnosis)a

High risk groups for sexually transmitted infection

Demonstrated the need for services by high risk groups and the ability to provide treatment at a large scale

Strengths: none reported

Limitations: incomplete data (missing dates, site, ID number)

Jacobs et al., From public to private and back again: sustaining a high service-delivery level during transition of management authority: a Cambodia case study [65].

Cambodia

Enfants et Développement project taken over by Swiss Red Cross (SRC) (CRC co-author)

Patient data (includes child vaccination and birth-related information)a

People without access to health services during transition to a national health system

Demonstrated how transition from NGO to public service delivery can be monitored and achieved without a loss in service capacity and quality

Strengths: none reported

Limitations: lack of controls for comparison with the study sample

Kohli et al., A Congolese community-based health program for survivors of sexual violence [66].

Democratic Republic of Congo

Foundation RamaLevina (FORAL) (co-author)

Patient records (includes demographics, experience of sexual violence, physical and mental health problems, treatment)a

Survivors of sexual violence in a conflict-affected country

Demonstrated the need and ability of mobile health services to support and strengthen existing services by reaching rural and conflict-affected populations

Strengths: none reported

Limitations: limited data collected as new clinical form designed to minimise the burden of documentation for patients and clinicians

Lindgren et al., Using mobile clinics to deliver HIV testing and other basic health services in rural Malawi [67].

Malawi

Global AIDS Interfaith Alliance (GAIA) (co-author)

Patient data (presenting illness)a

Rural communities without access to HIV services

Demonstrated the need and effective monitoring of mobile clinics in remote rural villages and seasonal variation

Strengths: clinical forms well-matched with the government-run health centre records so comparison possible

Limitations: inconsistent data recording (e.g. not all sites distinguished between dysentery and diarrhoea)

Marsden et al., Risk adjustment of heroin treatment outcomes for comparative performance assessment in England [68].

UK

NGO name not reported (NGO-run services contribute data to the national monitoring system)

Drug treatment records (includes history and current substance use, health and social functioning, demographic information)a

Substance users in a high income country

Highlighted variation in good and poor practice across the UK so inequalities can be addressed

Strengths: comprehensive individualised data which can be stratified by site

Limitations: none reported

Odwe et al., Introduction of Subcutaneous Depot Medroxyprogesterone Acetate (DMPA-SC) Injectable Contraception at Facility and Community Levels: Pilot Results From 4 Districts of Uganda [69].

Uganda

Reproductive Health Uganda

Patient recordsa

Women receiving contraceptive services

Quantified the volume of contraceptive methods provided at NGO clinics

Strengths: none reported

Limitations: absence of unique patient identifiers for data from every clinic (including village health teams and mobile outreach).

Poenaru, Getting the job done: analysis of the impact and effectiveness of the SmileTrain program in alleviating the global burden of cleft disease [70].

Global

SmileTrain

Patient records (includes surgical procedures)

People without access to cleft palate/lip in low and middle income countries

Highlighted the global burden of disease caused by delayed surgery

Strengths: large multi-country dataset

Limitations: dataset needs to be combined with additional data sources for verification; not representative of the LMIC cleft palate/lip population as 79/171 LMICs represented

Ruckstuhl et al., Malaria case management by community health workers in the Central African Republic from 2009–2014: overcoming challenges of access and instability due to conflict [71].

Central African Republic

The MENTOR (co-author)

Community health worker records (includes basic demographic information, symptoms, test results, treatment)

Malaria-endemic region of a conflict-affected country

Highlighted specific local context issues: variation in malaria trends between the seasons and during periods of conflict

Strengths: longitudinal data (2009 to 2014)

Limitations: Incomplete data (not reported during peaks in violence); data collection tools not implemented across sites simultaneously

Wendland et al., Undocumented migrant women in Denmark have inadequate access to pregnancy screening and have a higher prevalence Hepatitis B virus infection compared to documented migrants in Denmark: a prevalence study [72].

Denmark

Unnamed NGO (which runs clinics providing healthcare to undocumented migrants)

Patient recordsa

Undocumented migrant women aged 18-45

Prevalence of pregnancy and sexually transmitted infection

Strengths: the ability to conduct research in a population who do not engage with national health services

Limitations: limited generalisability (do not know if the sample (women presenting to a clinic) were representative of the study population (e.g. more/less healthy)); some missing data (test results)