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