Informing prevention of stillbirth and preterm birth in Malawi: development of a minimum dataset for health facilities participating in the DIPLOMATIC collaboration
Rachael Wood,
Jane E Norman,
John Norrie,
Hilary Pinnock,
Queen Dube,
Harry Campbell,
Bridget Freyne,
Rebecca M Reynolds,
Beatrix von Wissmann,
Elizabeth Wastnedge,
Donald Waters,
Luis A Gadama,
Clemens Masesa,
Elizabeth Chodzaza,
Sarah Jane Stock,
Enita Makwakwa,
Catherine Bamuya,
Esmie Banda,
James Boardman,
Effie Chipeta,
Mia Crampin,
Sarah Cunningham Burley,
Jean Desire Kabamba,
Elizabeth Grant,
Caroline Hollins Martin,
Aisha Holloway,
Khondwhani Kawaza,
Doris Kayambo,
Corrine Love,
Brian Magowan,
Monica Malata,
Martha Masamba,
Fadhila Mazanderani,
Gladys Membe- Gadama,
Catherine Mkandawire,
Patricia Munthali,
Peter Mwaba,
Shakira Namisengo,
Everist Njelesani,
Linda Nyondo-Mipando,
Muriel Syacumpi,
Frank Taulo,
Alexandra Viner
Affiliations
Rachael Wood
Public Health Scotland, Edinburgh, UK
Jane E Norman
University of Nottingham Executive Office, University of Nottingham, Nottingham, UK
John Norrie
Robertson Centre for Biostatistics, University of Glasgow, Glasgow, UK
Hilary Pinnock
Asthma UK Centre for Applied Research, Usher Institute of Population Health Sciences and Informatics, The University of Edinburgh, Edinburgh, UK
Queen Dube
Paediatric Department, University of Malawi College of Medicine, Blantyre, Malawi
Harry Campbell
Unit of Cardiovascular and Nutritional Epidemiology, Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden
Bridget Freyne
Clinical Infection, Microbiology and Immunology, University of Liverpool, Liverpool, UK
Rebecca M Reynolds
Centre for Reproductive Health, University of Edinburgh, Edinburgh, UK
Beatrix von Wissmann
Information Services Division, NHS National Services Scotland, Edinburgh, UK
Elizabeth Wastnedge
1 The University of Edinburgh MRC Centre for Reproductive Health, Edinburgh, UK
Donald Waters
MRC Centre for Reproductive Health, The University of Edinburgh, Edinburgh, UK
Luis A Gadama
Department of Obstetrics and Gynaecology, University of Malawi College of Medicine, Blantyre, Malawi
Clemens Masesa
Malawi-Liverpool-Wellcome Trust Clinical Research Programme, Blantyre, Malawi
Elizabeth Chodzaza
Faculty of Midwifery, Neonatal and Reproductive Health Studies, University of Malawi Kamuzu College of Nursing, Blantyre, Malawi
Sarah Jane Stock
Centre for Medical Informatics, The University of Edinburgh Usher Institute of Population Health Sciences and Informatics, Edinburgh, UK
Enita Makwakwa
Malawi Epidemiology and Intervention Research Unit, Lilongwe, Malawi
Catherine Bamuya
Malawi Epidemiology and Intervention Research Unit, Lilongwe, Malawi
Esmie Banda
James Boardman
Effie Chipeta
Mia Crampin
Sarah Cunningham Burley
Jean Desire Kabamba
Elizabeth Grant
Usher Institute of Population Health Sciences and Informatics, The University of Edinburgh, Edinburgh, UK
Caroline Hollins Martin
Aisha Holloway
1 Nursing Studies, School of Health in Social Science, The University of Edinburgh, Edinburgh, UK
Objective The global research group, DIPLOMATIC (Using eviDence, Implementation science, and a clinical trial PLatform to Optimise MATernal and newborn health in low Income Countries), aims to reduce stillbirths and preterm births and optimise outcomes for babies born preterm. Minimum datasets for routine data collection in healthcare facilities participating in DIPLOMATIC (initially in Malawi) were designed to assist understanding of baseline maternal and neonatal care processes and outcomes, and facilitate evaluation of improvement interventions and pragmatic clinical trials.Design Published and grey literature was reviewed alongside extensive in-country consultation to define relevant clinical best practice guidance, and the existing local data and reporting infrastructure, to identify requirements for the minimum datasets. Data elements were subjected to iterative rounds of consultation with topic experts in Malawi and Scotland, the relevant Malawian professional bodies and the Ministry of Health in Malawi to ensure relevance, validity and feasibility.Setting Antenatal, maternity and specialist neonatal care in Malawi.Results The resulting three minimum datasets cover the maternal and neonatal healthcare journey for antenatal, maternity and specialist neonatal care, with provision for effective linkage of records for mother/baby pairs. They can facilitate consistent, precise recording of relevant outcomes (stillbirths, preterm births, neonatal deaths), risk factors and key care processes.Conclusions Poor quality routine data on care processes and outcomes constrain healthcare system improvement. The datasets developed for implementation in DIPLOMATIC partner facilities reflect, and hence support delivery of, internationally agreed best practice for maternal and newborn care in low-income settings. Informed by extensive consultation, they are designed to integrate with existing local data infrastructure and reporting as well as meeting research data needs. This work provides a transferable example of strengthening data infrastructure to underpin a learning healthcare system approach in low-income settings.DIPLOMATIC is funded by the UK National Institute for Health Research.