Home-based records

A home-based, personal health record — from this point forward referred to as a home-based record (HBR) — is a medical document (more often physical rather than electronic) issued by a health authority (such as a national, provincial, state or district health department) on which an individual’s history of primary healthcare services (e.g., vaccinations) received (including a description of the service and the date of service) from all healthcare providers is recorded. In contrast to a facility-based record, the home-based record is maintained in the household by an individual or their caregiver (e.g., mother, father, grandparent, etc).

Within immunization service delivery, HBRs serve as an important information resource to enhance health professionals’ ability to make clinical decisions and prevent unnecessary repetition of vaccination, to empower patients/caregivers around immunization services, and to support public health monitoring. In the area of immunization performance monitoring, HBRs fill a gap where facility-based registers often fall short, such as for supporting outreach activities to vaccinate un-/under-immunized children and serving as a source of documented vaccination history in household coverage surveys. In population-based, household coverage surveys, evidence of vaccination history is ideally informed by documented evidence on HBRs maintained in the household or by caregiver recall, the latter being a source of information that is increasingly scrutinized as recommended immunization schedules become more complex.

HBRs are also important for documenting vaccination status for international travellers to countries requiring proof of vaccination against certain vaccine preventable diseases, such as yellow fever and, more recently in selected regions, polio. The Yellow Card, or Carte Jaune, is a home-based record issued by the World Health Organization to provide a standardized document for travelers. The document, recognized internationally when appropriately completed by authorized health professionals following receipt of immunization services, dates to the early 1950s and the adoption of the International Sanitary Regulations, now known as the International Health Regulations.

Finally, HBRs serve an important role in countries requiring proof of vaccination status for children prior to school entry. Schools provide a unique, widespread community-based environment for protecting children, their families and the general public from vaccine-preventable diseases and promoting health more broadly. Recent work has highlighted the delivery of immunization services through schools and provided strong evidence for vaccine delivery via schools as a mechanism for improving vaccine uptake.

What do home-based records look like?

Home-based records take many forms. They vary in complexity across, and sometimes within, countries. Recent reviews of HBRs from the immunization service delivery perspective have highlighted these differences and lack of content standardization (WHO review, Young et al 2014). Anecdotal evidence suggests that private and public health providers utilize different HBRs in some countries, but documentation of differences in HBR form between private and public settings or any challenges that may arise from such differences is scant. A brief description of differences identified in one area of India is provided by Professor Rane and colleagues.

In 1994 the World Health Organization produced the document Home-based maternal records, a document which provided guidance for development including content and design as well as notes for introduction into a health system. More recently in 2015, the World Health Organization produced the Practical Guide for the Design, Use and Promotion of Home-based Records in Immunization Programmes, which described design and content issues for multiple target audiences and highlighted specific design elements for countries to consider when adapting, revising or developing a home-based record keeping immunization front and centre.

The HBR form continues to evolve (see [1] for an electronic repository of HBRs). In many countries, the HBR evolved through the national immunization programme from a simple recording document, often the front and back of a small card, on which basic child demographic information (e.g., name, sex, date of birth) and vaccination services were documented. As the importance of early childhood nutrition and growth monitoring became a focus of child survival programmes in the 1980s, the vaccination-only card (NB: Young and colleagues (2014) proposed a taxonomy for HBRs based on form in their description of the evolution of the document as it was used in national immunization programmes that followed on the content shifts) evolved to include growth monitoring recording charts and basic health educational information. More recently, there has been a shift towards more comprehensive health booklets that combine the functions of a broad array of health service recording alongside expansive health education messaging. In Japan, such a comprehensive document has been utilized for more than 60 years following the introduction of the maternal and child health handbook by the Ministry of Welfare (currently known as the Ministry of Health, Labor and Welfare) in 1948. Through the Japanese International Cooperation Agency (JICA), the maternal and child health handbook has been adapted and implemented in other countries (see [2] for more information).

Some have expressed concern with the current shift towards lengthy, text heavy comprehensive health booklets --- particularly in communities where literacy levels are known to be low or in known mobile populations --- and encourage appropriate field testing with both caregivers and health workers prior to going to scale with such a design. Moreover, there is concern about the appropriate balance of the HBR serving as a recording tool for health service delivery and as a vehicle for delivering public health messaging.

The HBR must be durable enough to withstand regular use through the childhood years (at a minimum). Because HBRs may be exposed to a variety of harsh environments, both inside and outside the household, some countries (e.g., Fiji) have utilized innovative paper product materials that resist moisture, fire, pests, bacteria and tearing while also accepting ink (e.g., standard ball-point pen) and pencil marks without information being smudged or wiped off. In other countries, the HBR is housed in a protective plastic sleeve. Further work is needed to explore the marginal added costs associated with use of synthetic paper or protective sleeves.

Ontology of home-based records

Just as home-based records take many forms, there is no universal terminology for referring to these documents across countries. As such, it is important to maintain a dynamic, country-specific thesaurus of reference terms for HBRs.

In some places, the HBR is referred to by the following English terms:

• vaccination or immunization card
• vaccination or immunization record
• vaccination (history) or immunization (history) record
• child health book
• infant health book
• child health record
• well baby book

The following is a listing of the terms used in the respective local context (with English translation where available and necessary) for referring to a HBR. This is a dynamic, working list of terms, and it is hoped that the population of this listing will facilitate better communication around HBRs when interacting with immunization and child health programmes at the country level.

INSERT TABULAR LISTING

Who distributes home-based records and when are they distributed?

In general, home-based records are distributed by health professionals, either public or private healthcare providers. In some countries, HBRs are distributed to expectant mothers during the prenatal period when a woman comes for her antenatal check-ups, while in others, the document is provided to a mother either at the birth of her child or at the child’s first health encounter after birth.

Because many countries recommend several immunizations be delivered within 24 hours of birth (e.g., hepatitis B birth dose, polio birth dose) or soon after birth (e.g., bacillus Calmette-Guérin, BCG, vaccine), the HBR should be delivered no later than the time of delivery of the first vaccination(s) at which time the vaccination and date-of-service is recorded on the document.

At present, documentation on the timing patterns of HBR distribution across countries (e.g., prenatal, at birth, at first vaccination) is lacking as is whether there is an optimal time of HBR distribution with regards to utilizing the document as a vehicle for generating demand for primary care services during the first year of life.

How is the home-based record used?

In its most basic form, the home-based record is a medical document on which all primary healthcare services received by an individual can be recorded. As such, when an individual comes to a health facility, the HBR is provided to the health worker for review. After reviewing the health history of the individual in the HBR and perhaps in the facility-based record(s), the health worker updates any missing information in the HBR, provides necessary healthcare service(s) and carefully records the delivered service(s) as appropriate in clear, legible handwriting along with the date of service as well as the date of the next expected visit. Ideally, additional information such as place of service, provider’s sign-off and other supportive notes (e.g., history of allergic or other adverse reactions to a vaccine or medication) that may be useful for healthcare providers to know are also recorded on the document. (N.B., Ideally, if an individual presents without his/her HBR, an updated replacement HBR is provided with education to keep the document safe and to bring to all future health encounters.)

A well-trained health worker will also review what services were delivered, why they were delivered, what to expect and how to proceed if there are post-treatment reactions and review the date of next visit and remind the individual to keep the HBR safe from harm and to bring the document to each health encounter. The absence of a completed record of services in clear, legible handwriting ultimately compromises the function of the HBR and potentially future healthcare delivery.

As noted above, HBRs have evolved in many communities to include health education messaging in addition to sections for recording immunization services, growth monitoring, infant and young child feeding practice monitoring as well as dental care and other primary preventive health services. Health education placed on HBRs largely began with brief reminders on the importance of infant and young child feeding practices, namely exclusive breastfeeding. Messaging expanded to cover the importance of other areas within maternal and child survival programmes such as what to do in the presence of fever, the importance of sleeping under insecticide treated bed nets, recognition of dehydration and how to properly prepare oral rehydration, awareness raising of developmental milestones among many other areas.

Unfortunately, many knowledge gaps remain with regards to how health workers interact with the HBR, the type of pre-service and in-service training that they receive around proper recording practices, and the quality of health worker provided health education messaging with cross-reference to the HBR. Little is known how HBR design facilitates, or impedes, good recording practices and/or work flow or how the document’s design may influence its perceived value by individuals or their caregivers. Beyond immunization, there is little documented evidence regarding how effectively the HBR is used as a recording tool. The most notable area is growth monitoring for which much space in HBRs is dedicated.

In addition, there are few references documenting how individuals or their caregivers interact with the HBR whether be it as a reference document for health information, as a reference document for services received or solely as a reminder for the next visit.

As part of their work with the Bill and Melinda Gates Foundation supported Records for Life contest, the Center for Knowledge Societies explored areas of perceived caregiver value around HBRs and different record designs in selected communities in Kenya, India and Indonesia; a project report can be found here.

Who are the users of home-based records?

Several primary users that interact with home-based records are the individual owner or their caregiver, the health professionals and the public health monitoring community. With regards to immunization, the HBR is a source of information for caregivers on the importance of immunization, on vaccinations received and those yet to be received vis-à-vis the nationally recommended immunization schedule as well as other child survival interventions and a tool to encourage caregiver participation in the health care of the child. For health professionals, the HBR facilitates the coordination of care serving as a tool for improving the identification of at-risk individuals, for improving the continuity of care over time and coordination of care across health providers (e.g., avoidance of unnecessary re-vaccination of children already vaccinated and avoidance of missed opportunities for delivering services) as well as supporting the promotion of other child survival interventions. For public health monitoring professionals, the HBR provides a tool to support programme performance and health worker accountability assessments in surveys and triangulation exercises.

The World Health Organization’s Practical Guide reference document provides background on considerations for design and content when designing a HBR.

How long have home-based records been used?

Documented origins of home-based records are scant. There is some evidence that vaccination cards were utilized to document receipt of smallpox vaccine in the mid-19th century. Rollet’s research suggests that the HBR in France (i.e., carnet de santé) has origins dating to the 19th century and Dr Jean-Baptiste Fonssagrives, who wrote in 1868 of the important role of the mother to record in writing observations about her child to help communicate with the physician. Home-based records have been used to document health services and provide health education messaging to mothers in Japan through a maternal and child health handbook since 1948. Donald and Kibel highlight work by Morley in Nigeria recommending a HBR for health in 1962 as well as the precursor to South Africa’s Road-to-Health card (now a booklet). A publication by Markellis, then Commissioner of Health for Genesee County Health Department, New York in 1973 described the Markellis Card, a simple document that focused on not only providing a place for recording dates of service and date of next vaccination for recommended immunization services during infancy but also listed recommended immunization services beyond infancy. And of course, vaccination cards were utilized by many national immunization programmes near the roll out of the Expanded Programme on Immunization in 1974 to document recording infant vaccinations and maternal tetanus toxoid vaccination.

Is there a place for home-based records alongside electronic health records and/or electronic registries?

In some communities, electronic health information systems, including electronic nominal immunization registries, are being implemented. Many believe that there is a place for physical home-based records to co-exist with electronic health records. Keep in mind that in many countries, electronic information systems remain in their infancy. As these systems continue to mature, and perhaps even beyond, a physical HBR system is important to maintain in case the electronic system is interrupted or is not fully functional across an entire country. In some countries, the necessary infrastructure (electricity, connectivity, health worker computer literacy, etc) for a reliable electronic information system remains years away. In other settings, reliable electronic information systems exist, but systems may not be fully interconnected across sub-national units to allow for health information exchange (e.g., a health worker in one state can query and edit records in the electronic system in her state, but she cannot access the information system of a neighbouring state). Health information exchanges between public and private providers as well as across national borders are also a challenge in many places. These issues, and others not noted here, provide a basis for maintaining a physical home-based record programme. For example, in communities like Monrovia, Liberia where caregivers frequently change healthcare providers in search of high quality care, a HBR is a necessary information source for care providers to know what immunization services an individual has and has not received since they will likely not have seen the child before and thus have no existing facility-based record. In Lesotho, where caregivers may take their children into South Africa for healthcare services, a HBR is necessary given the absence of health information systems that communicate seamlessly across country borders. And even in the United States of America, where electronic immunization registries exist in all states with a range of participation levels and where one-in-five children have visited more than one health provider by the age of two years, HBRs remain an important tool for providers and caregivers in monitoring immunization services received.

How much do home-based records cost?

There is very little information available on the financing of and expenditures for home-based records. Young and colleagues describe an environment where the cost of producing HBRs is one very much subsidized by support from development partners with some cost sharing across programmes (e.g., shared financing with nutrition). Young and associates report that printing expenditure per record ranged from US$0.01–3.36 with expenditures per record <US$0.50 in 69% (53/77) of reporting countries with available information. At the time of their report, the authors also highlight the need to further understand “the potentially complex financing relationships for home-based records that exist between a national immunization programme, Ministry of Health and development partners” including whether HBR stock-outs are more likely to occur in the absence of financial control where a programme is either dependent on development partners or "when multiple departments within a Ministry of Health share or rotate responsibility for procuring HBRs."

In addition, there is little understanding of the lacking attention towards dedicated budgetary lines for HBRs in costed multi-year planning exercises in many countries. Efforts to better influence and exploit such opportunities moving forward may be important.

What are the public health challenges for home-based records?

The effectiveness and efficiency of home-based records to fulfil their intended purpose is constrained by several factors. First and foremost, the HBR must be appropriately designed, printed in adequate quantities for the targeted birth cohort (plus quantities for replacement) and distributed to facilities/health posts and then to individuals or their caregivers. Factors that impact on these activities, such as poor forecasting and planning as well as absent dedicated budget for HBRs controlled by the programme itself, need further attention and correction. Some have postulated whether there are opportunities to bundle HBRs with other vaccine delivery supplies as a means to reducing HBR stock-outs.

It is critical that HBRs are completed appropriately at the time of service by health workers in clear, legible handwriting and/or the use of stamps or stickers. Health workers should also provide communicate with caregivers about what services were delivered, why they were delivered, what to expect and how to proceed if there are post-treatment reactions as well as a review the date of next visit if necessary and reminder to keep the HBR safe from harm and to bring the document to each health encounter.

There is little information on whether supportive supervisors include specific observation of HBR recording in their facility and service observation visits with subsequent in-service training to address deficiencies. In the work by Usman and colleagues (2011), health education messaging appeared equally important to HBR re-design in a randomized trial using specialized project staff. Additional studies may be warranted to further understand the current practices of health workers in recording and provision of health messaging with concurrent reference to the HBR as well as the effectiveness of pre-service and in-service training of health workers.

Using electronic images of HBRs captured in the field, on-going research is examining and describing completion patterns across documents with the aim of deriving corrective guidance for pre-/in-service training of health workers. Anecdotal evidence suggests only selected sections of HBRs in some countries are completed by health workers thereby limiting their usefulness. More formal studies may prove useful to examine whether all relevant sections of an HRB, such as growth monitoring curves, are completed and up-to-date based on the age of the child.

Finally, individuals or their caregivers must keep the HBR safe from harm, return for services as recommended by their health professional and bring the HBR with them to each health encounter. Several studies have explored characteristics of those who have retained a HBR in an effort to inform potential corrective interventions.

The Records for Life contest, supported by the Bill and Melinda Gates Foundation, provided an opportunity to examine the opportunities for design-related changes in the HBR that might influence improved health worker interaction with the document and caregiver retention of the document.

To monitor efforts to provide HBRs to newborns or their caregivers either during the prenatal period, at birth or at the first immunization encounter in order to meet the functional needs noted above, immunization programmes (or health systems) are encouraged to track the proportion of children who have ever received a HBR, i.e., ever HBR ownership. Low ever HBR ownership levels indicate system problems with assuring availability and access to this basic recording tool, including failures in forecasting needs for printed quantities or more broad logistics management issues as well as presence of barriers (e.g., financial) to access.

Beyond assuring the availability of the HBR, immunization programmes are also encouraged to track current HBR ownership, i.e., the proportion of children for whom a HBR is available for viewing at any given point in time. The prevalence of current HBR ownership is a function of availability of a record and retention of a record once received. Beyond availability issues, low current HBR ownership levels may indicate problems among caregivers with regards to acceptance or value placed on the document as well as suboptimal record design and/or durability. Brown and Gacic-Dobo (2015) reported on the prevalence of ever and current HBR ownership and highlighted countries where current HBR ownership levels were low and HBR loss rates between ever and current ownership levels were high along with the implications for countries in terms of missed opportunities to stimulate demand for immunization services and risk of suboptimal communication and coordination of care, risk of unnecessary and costly re-vaccinations, and risk of information bias in survey and public health monitoring efforts. A website also tracks prevalence of HBR ownership.

Not surprisingly, factors associated with low levels of vaccination coverage are similarly (though not uniformly) associated with low levels of current HBR ownership (Mukanga and Kiguli, 2006; Pahari et al, 2011; Sadiq Sheikh and Asad Ali, 2014; Tsawe et al, 2015). A group led by Brown is currently exploring and documenting relationships between sociodemographic characteristics of caregivers and households and HBR ownership levels as well as drop-out with the aim of completing a meta-analytic summary across nationally representative household surveys in more than 50 low- and middle-income countries that conducted a Demographic and Health Survey or a Multiple Indicator Cluster Survey.

What is the business case for home-based records?

There is lacking information on the establishment of a business case for investing in home-based records by national immunization programmes and Ministries of Health and international development partners. The lack of a business case for HBRs seems to parallel an apparent lacking investment case for information systems more broadly within the child survival domain of international development in spite of recent calls for greater attention towards improved data quality. Brown (2014) highlighted the potential cost savings of ensuring adequate supplies and maintaining high levels of ownership against the potential costs of the fully vaccinated child and of unnecessary re-vaccination with more expensive new vaccines.

In a recent comment posted by the Better Immunization Data Initiative, Brown highlighted the need for “discussion around how national immunization programmes might collectively ensure the variety of their needs with respect to procuring (perhaps (re-)designing as well) HBRs for their respective annual birth cohorts is matched by a diverse arena of support within a broad market capable of meeting those needs with appropriate quality and efficiency considerations.” He highlights the possibilities that may exist for countries to collaborate regionally or sub-regionally in exploring unique financing arrangements for access to bulk pricing arrangements for durable synthetic paper options that could extend the life of HBRs against harsh environments and/or document design-print services.

Brown further notes, “[w]ith an awareness of the successes, challenges, and lessons learned from market shaping around vaccines as well as in other areas, a vision that encompasses regional coordinating groups to stimulate, manage and shape markets for home-based vaccination records with the full engagement of the national immunization programmes from within the (sub-)regions seems within reach. The success of such market shaping will rely on strong partnerships and shared risks as well as a willingness by national immunization programmes to take the lead in a proactive and coordinated manner.”

It is unclear whether the call to experts in child survival commodity market shaping has been heard.

Recent and on-going activity to understand and improve the effectiveness of home-based records

COUNTRY: India (Mumbai)

INTERVENTION: Re-design of HBR

DESCRIPTION: See video description located at http://vimeo.com/92606863. Additional description can be identified here.

IMPACT/FINDINGS:

COUNTRY: Pakistan (Punjab)

INTERVENTION: ‘Har Zindagi- Every Life Matters’ Initiative inclusive of re-design of HBR

DESCRIPTION: This initiative led by the Innovations for Poverty Alleviation Lab (IPAL) at Information Technology University will involve a re-design of the local HBR as part of a broader set of activities targeting improvements in child health and immunization. A brief description can be found here.

IMPACT/FINDINGS:

COUNTRY: Uganda (select districts)

INTERVENTION: MyChild system by Shifo Foundation

DESCRIPTION: A detailed description of the MyChild system can be obtained here. Briefly, after child registration, the MyChild system includes a HBR designed to allow health workers to complete recording at the time of service delivery and then digitize information through a convenient scanning and upload process centered at local health facilities that addresses frequent challenges of electricity and connectivity in low-resource settings. The system includes report generation capabilities for health facilities, and it allows for follow-up SMS reminder messaging to caregivers. The system has been tested in several districts in Uganda with plans for further implementation elsewhere.

IMPACT/FINDINGS:

COUNTRY: Kenya

INTERVENTION: Linkage of agricultural credits with current HBR ownership

DESCRIPTION: A Grand Challenges Canada funded project conducted in select counties in Kenya utilized provision of agricultural credits to mothers who ensured their children received recommended vaccinations. The conditional incentive programme developed by Benson Wamalwa, a research scientist and lecturer at the University of Nairobi, and a team of 13 members from various fields including community work, social sciences, social statisticians, community health and local administration included an innovative system to digitize the recording of vaccination services using a barcode for each vaccine received by mothers and children that was then printed on stickers and appropriately placed on the national home-based mother and child health handbook given to expectant women during their first antenatal care visit. Nurses use smartphones to read-and-update information related to the vaccination as well as upload agricultural credits that can then be redeemed at specified centres partnering with the project for discounts on agricultural products such as seeds and fertilizers based on pre-negotiated prices. To access the credits, mothers visit one of the centres with the home-based record containing the barcodes, which are then scanned. Benson and colleagues report improved vaccination coverage in the Bungoma and TransNzoia counties where the project was piloted. In addition to facilitating recording of vaccinations, incentivizing caregivers to take their children for all recommended immunization services, the investigators reported improved food security in the pilot areas with participating households reporting improved bean harvests. As noted in a prior review, at present, there are no available reports describing the design, implementation and evaluation of the project. While online reports suggest improvements in the percentage of children in the intervention areas who are fully vaccinated from 55% to >90% following introduction of the intervention, documented results remain unidentified.

IMPACT/FINDINGS:

COUNTRY: Pakistan

INTERVENTION: Financial incentive mechanism tied to timely and complete vaccination using RFID tag on HBR

DESCRIPTION: Interactive Research and Development's Zindagi Mehfooz (Safe Life) program operates a phone-based, online immunization registry in Karachi, Pakistan that utilizes radio frequency identification (RFID) tags placed on a child’s home-based vaccination record to help track appointments and to ensure the child is receiving appropriate vaccinations a the correct interval. In addition, the RFID is linked to a lottery system, which distributes prize payments using mobile money, to reward caregivers who bring their children in for timely and complete vaccinations. When the child receives vaccinations, the RFID on the home-based record is scanned. With each subsequent vaccination that a child completes and for all vaccinations that are completed on time, the potential prize amount increases. Upon winning the lottery, the caregiver receives a code via their mobile device which can later be redeemed at a local kiosk. Store owners verify the transaction by scanning the RFID on the child’s vaccination card. As an additional incentive to encourage vaccination of children, each time a caregiver is awarded a prize, the health worker who was responsible for administering that vaccination or scheduling that appointment also receives a mobile money payment equivalent to 40 percent of the lottery prize. Utilizing client-side SMS reminders and the lottery system, Zindagi Mehfooz’s primary aims include increase access to immunization services, reducing loss to follow-ups and improve timeliness of follow-ups. The system, in addition to implementing initiatives that seek to improve health system quality (through accurate data collection and health record maintenance) and health worker motivation (incentives based on total children vaccinated), uses this combination of reminder and incentives strategy to encourage parents to make the trip with their child to a vaccination facility multiple times over the course of the first two years of their infant's life. The strategy also inherently encourages the caregiver to retain the home-based record since the reward is accessed through the RFID tag placed on the record. Unfortunately, an evaluation of the Zindagi Mehfooz has not been identified.

IMPACT/FINDINGS:

COUNTRY: Global activity

ACTIVITY: Assessment of physical condition of HBRs in the field and loss of information resulting from damage as well as legibility of recorded information in HBRs in select areas

DESCRIPTION: Much information in home-based vaccination records is handwritten thereby making handwriting an important occupational task for vaccinators and frontline health workers. Anecdotal evidence suggests vaccination service delivery recorded dates and notes are often difficult to read, perhaps only understood by the originating health worker. Concern has been expressed that poor legibility of vaccination related information on HBRs may lead to poor communication from health provider to caregiver and/or other health providers in the form of misinterpretation of vaccines delivered, dates of vaccination, relevant medical notes related to vaccination (e.g., prior adverse events) and other medical errors ultimately compromising the fundamental role of the document.

The World Health Organization is currently conducting a review of electronic images of HBRs from selected field sites to assess the physical condition of HBRs and examine the legibility of vaccination dates and other related available information recorded on the vaccination history page.

IMPACT/FINDINGS:

Resources

World Health Organization, Home-based records

Home-based Record Repository

BBC In Pictures: The Immunization Card – A lifesaver

International Committee on MCH Handbook