Health information systems and medical record keeping … · · 2017-11-21Health information...

HIS & MRK in Malawi 1

Health information systems and medical record keeping in Malawi: A report on preliminary field research with recommendations

Alistair G Tough, DLitt, Principal Investigator

Paul Lihoma, PhD, Key Collaborator

SFC/AN/15/2016: Field work carried out during May and June 2017


Table of contents

Acknowledgements

3

Introduction

4

Executive summary

5

Description of field work

6

Analysis of findings

Introduction – pathways to care

7-8

Record keeping matters – general

8-10

Record keeping matters –data

10-11

IT issues and utilisation

11-12

Other matters

12-14

Human factors

14-15

Summary of challenges

16-17

Recommendations: Possible ways forward

18

Appendix 1: List of people consulted

19

Appendix 2: Information gathering instrument

20-21

Appendix 3: Scheme of coding for data obtained from respondents

22

Appendix 4: Bibliography

23-25


Acknowledgements

We should like to give thanks to a large number of people working in hospitals and other health facilities who were invariably cooperative, unfailingly courteous and generous with their time. The restrictions imposed by ethical research provision prevent us from naming them individually but we acknowledge a deep debt of gratitude to them.

At the MLW we would like to give particular thanks to: the Director, Prof Stephen Gordon, for having agreed to host this research; to Prof Melita Gordon for hospitably receiving us into the Salmonella and Enteric Disease Research Group; and to a host of colleagues for their support both logistical and intellectual. Amongst these Evelyn Kossam deserves special mention. In the University of Glasgow we would like to pay tribute to Prof John Briggs whose leadership by example has been an inspiration, Prof Lorna Hughes, Prof Iain McInnes and Dr Stefan Seibert whose support has been a great encouragement and to Christelle Le Riguer, Claire Munro and Elaine Wilson for their administrative support.

Finally, thanks are due to the taxpayers of the United Kingdom. Their willingness to provide funds, via the Global Challenges Research Fund, Scottish Funding Council and the University of Glasgow has made this work possible.

The PI would like to acknowledge the advice, guidance and practical support of Dr Paul Lihoma who has been a very ‘hands on’ Key Collaborator in the research project described below. The PI would like to thank Yvonne Tough, his wife, and Alec Tough, his son for their support during the two months of his absence. Thanks are due also to Kirsten Donaldson Wheal who has acted as a locum in the PI’s absence.


Introduction In designing a health management and information system, the ideal is a system that captures as many data elements as possible as bye-products of the management immediate patient care. This can only be achieved by means of integration with medical record keeping systems. The desirability of such systems has been recognised for a long time – about one hundred years. However, delivering them has proved to be a long and laborious process, with many set-backs along the way (Maxwell-Stewart and Tough, 1999).

In Sub-Saharan Africa, health management information systems tend to deliver incomplete, out of date and misleading data. Attempts to address these challenges are frequently carried out by means of desk research based on ‘top-down’ approaches (Haugen and Roll-Hansen, 2017). The starting point of this research was the proposition that information systems should deliver what front-line health staff need first. Accordingly, the research started at the grass roots with the record keeping behaviours of clinicians, pharmacists, nurses, midwives and other frontline healthcare staff and their patients.

Medical record keeping systems frequently capture the same data elements that are required by health information systems. Frontline staff devote time to creating or adding to medical records in two formats. Firstly they keep records internal to the clinics, dispensaries and hospitals in which they work (San Joaquin, 2013, Wilms, 2014). Secondly, they make entries in the health passports that over 90% of the Malawian population possess. These simple card and paper documents have been described as having the advantage that they provide an integrated record of immunizations, public health interactions, illnesses and attendances at health facilities for each person (Neville, 2009). At present, compiling statistical returns for the district medical officer constitutes an additional and sometimes unwelcome burden superimposed on the normal medical record keeping duties of frontline personnel (Igara, 2007).

The goal of the research was to identify ways in which medical record keeping systems and health information systems might be integrated. The aims include minimising the workload of busy frontline health professionals and radically improving data quality. Specific objectives were: to gather information regarding current medical record keeping practices internal to at least 2 hospitals and all local health facilities in one district; to analyse the data gathered and to contextualise the analysis in relation to the challenges surrounding Health Information Systems in Malawi; to share the findings of the research and engage in discussion with stakeholders; to disseminate the findings and proposed future developments; and possibly to prepare, in conjunction with key stakeholders in Malawi, a major funding proposal for a research project to support large scale systemic change. The study settings were Blantyre, Chikwawa and Zomba.


Executive summary An ideal health management and information system captures as many data elements as possible as bye-products of the management of immediate patient care. This can only be achieved by means of integration with medical record keeping systems. An integrated system will:

• Support the delivery of current patient care; • Link up to continuing care; • Ensure probity in the management of resources (drugs, equipment, vehicles, et cetera); • Provide management and planning data, promptly and at both the national and local level • Support research.

The reality in Malawi is a long way from this ideal. By carrying out qualitative research at the grassroots of the health service we identified seven key challenges

1. Duplication of information in parallel record keeping systems, many of them laboriously maintained by hand, is widespread

2. The use of health passports as a critical component of the record keeping system has serious disadvantages: in the absence of patient records kept on the premises, there is no means of validating returns sent to the Ministry of Health from health facilities; health passports can easily be lost; many people possess more than one health passport.

3. A considerable amount of work goes into compiling registers throughout the health care system. Their potential value as information assets is not realised because they lack an effective infrastructure of retrieval.

4. Shortages of clerical support staff are common. As a result, members of frontline health care staff have to undertake clerical or data capture work at the expense of their core duties. This situation leads to uncaptured data and data errors.

5. There is no adequate and appropriate training for data clerks and other record keeping specialists. This in turn leads to an absence of appropriate accreditation and career progression pathways.

6. Unethical behaviour by health staff and patients is a cause for concern. Effective record keeping systems can help to detect and deter such behaviours.

7. The excessive use of official IT systems and equipment for personal and recreational purposes is a recurrent pattern in the public services in Malawi. In many public organisations 80% plus of server space is used in this way. This challenging situation has been factored in to our proposals.

We believe that new approaches that use intermediate and hybrid technologies have the best prospect of delivering satisfactory long-term solutions. Our recommendations are based on this belief.


Description of field work The research was grounded in the theoretical stance that information systems are sociotechnical systems (Alter, 2008). In this context, customers of information systems include the Ministry of Health, anti-corruption agencies, donors and a range of other key stakeholders. At an early stage in the project the researchers consulted with senior personnel in the Ministry of Health and other key stakeholders. Participants in information systems include clinicians, nurses, midwives and pharmacists. Participants work in government and private hospitals, clinics and other health facilities. Patients may be regarded as being half way between customers and participants.

This was a qualitative research project. The primary focus of the research was on real-life custom and practice. The study population consisted of participants in information systems, as defined in the previous paragraph. As is common in qualitative research, the sample is a purposive rather than a statistically representative one. This being the case, the size of the sample was determined primarily in relation to the geographical and institutional settings being studied. Thus, in Chikwawa District with 35 local health facilities the purposive sample consisted of all the lead frontline health staff in those 35 facilities. In practice we were not able to conduct interviews in all 35 facilities. In one instance the facility had been closed because a bridge nearby had been washed away (we discovered this only after we had forded the river). In another case, the post was only open for one day in each month. In contrast to the district study, our work in hospitals covered more institutions and yielded more interviews than we had originally committed to – in five hospitals rather than two. This figure includes Queen Elizabeth Central Hospital where Stephen Gordon had requested that we should take an interest in the Surveillance Programme of IN-patients and Epidemiology [SPINE] system: a separate presentation on that investigation was made.

Interviews with a range of participants were undertaken in the settings identified. In local health facilities, the most senior member of the frontline staff (nurse, midwife, medical assistant, et cetera) was interviewed if he or she was available. Otherwise interviews were conducted with another member of staff. In hospitals the focus was on clinicians and on clerical staff, particularly medical records personnel. Questions of sample size and sampling technique which necessarily arise in relation to quantitative research were largely inapplicable here.

Interviews were supplemented by observation and the collection of relevant documentation. The existing medical record keeping systems were analysed both in terms of their efficacy in support of immediate patient care and potential value as a source of planning and epidemiological data.

A data collection tool is attached to this report. The questions posed were intended to open discussion and to provide respondents with an opportunity to state their opinions and reflect on their experience. Where appropriate, supplementary questions were utilised to obtain clarification and to encourage respondents to elaborate on their statements. Analysis of the findings from this research was carried out by means of reiterative coding – identifying key terms and concepts used by respondents and defining inter-relationships between these - using the grounded theory approach (Bryman, 2004).


Analysis of findings

Introduction – pathways to care The smallest health facilities are health posts. Characteristically, they focus on the health of infants. They are distributed in remote areas to enable parents to bring in their young children for check-ups. Most health posts are open for a limited number of days in the month. Where staff at health posts feel there is cause for concern, families and guardians may be advised to take children to a health centre.

Health centres are larger than health posts and have more staff, although they rarely have fully qualified clinicians. Usually they are open on most days of the week. Health centre staff are expected to deal with common conditions such as malaria, HIV/AIDS and malnutrition in children. Some health centres have limited in-patient accommodation, including a labour ward where women can stay overnight if necessary. In addition, severely malnourished children may be kept at a health centre whilst an accelerated programme of supplementary feeding is implemented. Health centres can refer severe cases, uncommon conditions and injuries that they are ill-equipped to deal with on to hospitals.

There are District Hospitals in all districts. They are usually the most sophisticated in their district and have clinicians, specialist units and more advanced laboratories than the health centres. They deal with emergencies such as severe burns and road traffic accidents at any hour of the day or night. In addition, in some districts there are smaller rural hospitals. Patients sometimes prefer to attend the smaller rural hospitals, especially if access and transport are easier. The District Hospitals can refer patients to the Central Hospitals.

There are five Central Hospitals (Kamuzu Central Hospital in Lilongwe, Mzuzu Central Hospital, Queen Elizabeth Central Hospital in Blantyre, Zomba Central Hospital and Zomba Mental Hospital). These are the best equipped and staffed public hospitals in the country. The Queen Elizabeth Central Hospital is the country’s centre for the training of medical students. The Central Hospitals receive some patients directly and others as secondary or tertiary referrals. They can treat patients and then decide to transfer responsibility for their continuing care to a health centre or other facility closer to the patient’s home. Where responsibility for continuing care is transferred in this way, the District Health Officer is notified and has a role in maintaining oversight.

District Health Officers are responsible for making regular, mostly monthly, reports to the Ministry of Health in respect of all health facilities in their district. An exception is the Central Hospitals which report directly to the Ministry.

Robust four-wheel drive ambulances are distributed throughout the country. These play a significant role in the process of referral and transfer mentioned above. However, shortages of fuel and occasional failure to carry out necessary maintenance and repairs can limit their effectiveness.

There are some health centres and hospitals that are members of the Christian Health Association of Malawi [CHAM]. These were constructed by missionary organisations. Under a memorandum of understanding with the Ministry of Health these have their staff costs met by government. They charge for overnight stays, disposable supplies, infusion fluids and some drugs (not those that are supplied free by government). Patients are not obliged to attend CHAM facilities. They can choose


to do so because a CHAM health centre or hospital happens to be conveniently located or because they believe that standards of care may be better.

Record keeping matters – general

Health passports Health passports are held by the overwhelming proportion of people in Malawi. There are different types: for ante natal care; for children under five years of age; for women; and general. Those for ante natal care and children under five are provided free of charge. The other types are sold by health facility staff for between MK100 and 200: staff members buy them from commercial outlets and usually make a profit when selling them.

Each person’s essential demographic data (name, date of birth or age and address) appears on the health passport. During each care episode entries are made that include the date(s), nature of the patient’s complaint and symptoms, results of examination and tests, diagnosis and treatment (and referral to other health care facilities where appropriate). Entries are signed or initialled. In some circumstances, the health passport may be used by one member of staff to request a laboratory test and by another to report on the outcome of the test.

It has been argued that there are considerable advantages to a system that gives responsibility to patients and their families or guardians for the safe keeping of personal health records (Neville and Neville, 2009). Patients are spared possible anxieties about their records being lost by health facility personnel or improperly accessed and they are empowered to ensure the creation of a single integrated record of all their interactions at health posts, clinics, health centres and large and small hospitals. Where a patient lives a long distance away from a hospital out-patients’ department [OPD], care may be delivered via a local health facility closer to the patient’s home under directions given by the OPD clinician in the form of notes in the health passport.

There are, however, some drawbacks to the use of health passports as a critical component of the record keeping system in health care. To begin with, there is no means of cross-checking the accuracy of the returns sent to the Ministry of Health from health facilities. In the absence of patient record cards or case files kept on the premises, there is no parallel source from which to verify the returns.

Health facility members of staff have articulated a range of concerns about health passports. These included the following. Health passports can easily be destroyed or damaged to the point where they become illegible because many of the patients live in modest homes which may be dirty and are prone to water penetration and rodent infestation. In addition, many people possess more than one health passport. This can result from forgetfulness. In some health facilities, patients will be encouraged to buy a new health passport if they attend without their current health passport: they end up with two. However, in other health facilities they will be provided with a piece of paper to take away so that the details can be entered on a subsequent visit. There are, however, less haphazard patterns at work. Some patients do not wish it to be known that they are HIV positive or that they are participating in a family planning programme. Others choose to have a separate health passport for each health facility they use. A significant number of people have two or more health passports. This can impact negatively on the health care they receive because a full history is not available. A further complication arises because some people borrow a health passport from


someone else because their own is lost or full. In other words, they impersonate another patient to avoid the charge for a replacement.

Institutional records – registers Registers are found in every health facility in Malawi. The Ministry of Health issues a wide range of different types of register via the District Health Officers [DHOs]. Most registers correspond to a monthly statistical return that local health facilities should return to their DHO so that he or she can compile an aggregated return to the Ministry. So, for example, there is a monthly return for children under five and a register for children under five. The latter serves as the source for the former. Central Hospitals sit outside this pattern and make returns directly to the Ministry, using the same registers. Most reports made to the Ministry are sent to the Central Monitoring and Evaluation Division [CMED] but some are directed to departments concerned with a specialty, such as diabetes, HIV, Leprosy or TB.

The largest number of registers that we have seen in use in a single health centre is 19. These were: OPD; Sexually Transmitted Infections; Ante Natal Clinic; Maternity; HIV Tests; Family planning; Malaria; LA issues; EPI (vaccinations); Under 1 year of age; TTV (tetanus); ART (Anti-Retroviral Therapy); HIV care clinic; Chronic cough; OTP (severe malnutrition); Supplementary Feeding Programme; CST (malnutrition in adults); Kangaroo care (for underweight babies); and, HBB (Helping baby breath). This list is not exhaustive. Other registers were found in use elsewhere. Those health centres that carry out a programme of touring in the outlying villages keep a separate village clinic register.

Hospitals and other facilities that provide in-patient treatment naturally keep registers of admissions and discharges. Where there are laboratories, registers of tests are maintained. Virtually everywhere, pharmacy registers are kept to record prescriptions issued.

Some respondents articulated the view that the number of registers in use is excessive. They understand that the range is intended to simplify reporting procedures but argue that it un-necessarily complicates their working lives if they must carry out their duties with a dozen or more large volumes around their work station. In this context, the steady increase in population is a factor. Several respondents told us that their workload had increased substantially over time for this reason. On the other hand, respondents working in psychiatry expressed the view that mental health problems tend to be under-reported precisely because there are no separate registers for psychiatry in local health facilities.

The data elements contained in the registers vary. Nearly all provide some standard variables such as patient’s name, age and address. Other elements reflect the nature and purpose of the register. For example, a register of laboratory tests for malaria is likely to include details of the source from which a request was received (OPD et cetera), the date on which the request was received, the results of the test and when the results were communicated.

One of the drawbacks of the registers is that, so long as they exist in paper format only, they lack any effective infrastructure of retrieval. Entries are made in simple chronological order and no name index is compiled. So, if a patient has lost or forgotten their health passport it is difficult and time-consuming to find an entry or entries that provide information about their previous attendances. Staff members at some local health facilities refuse to make any attempt to retrieve information in


these circumstances. Others will carry out a search. However, the likelihood of locating relevant entries would seem to be low if the previous attendance was more than two months earlier.

Institutional records – case records Case files or record cards are generally found only where in-patient treatment is provided. The card-based systems for patients receiving ART as out-patients are an exception to this pattern. For women giving birth as in-patients at health centres and other local facilities card-based systems are used also.

The most sophisticated and formal case files are to be found in the field of psychiatry, at Zomba Mental Hospital. This reflects the requirements imposed by legislation. Other major hospitals possess case files also. Characteristically these include admissions document(s) parts of which are completed by clerical staff at the time of admission, along with treatment sheets, laboratory reports and records of vital indicators (blood pressure and temperature).

Amongst the small rural hospitals and health centres, those that are members of the Christian Health Association of Malawi [CHAM] tend to have the more sophisticated record keeping systems. They are also the facilities that are least likely to neglect the routine and sometimes tiresome tasks associated with implementing the systems. The explanation for this probably lies in the fact that CHAM institutions charge for their services and therefore they need to know which drugs, infusion fluids, disposable supplies and overnight stays should be charged to which patient. This having been said, it should be acknowledged that CHAM institutions are characteristically resource poor and often lack the infrastructure (suitable ICT equipment and/or cabinets, file covers and stationery) necessary to keep non-current records properly.

Record keeping matters –data issues There are three strands to this subject: uncaptured data; data errors; and data loss. Generally, uncaptured data reflects two factors. These are shortages of staff, especially staff with specialised clerical skills, and extreme pressure of work. They are inter-related. In the remote rural facilities particularly, it is common for there to be no one on the staff who is employed primarily to create records and capture data. This means that nurses, midwives, medical assistants, health surveillance assistants or laboratory personnel should do the work. They are often unenthusiastic about this additional duty. At times when there are large numbers of people waiting to be treated they may decide to skip records creation and data capture so they can carry out their primary functions. Similar patterns are not unknown in large hospitals, especially during the night and on the busiest days of the week. In addition, during industrial action by health staff, data will not be captured: as a result, for short and infrequent periods there will be a lot of uncaptured data.

A separate issue in relation to uncaptured data concerns mental illnesses. Members of staff at the Zomba Mental Hospital are convinced there is a serious under-reporting of mental health problems across Malawi. They attribute this to the difficulty that their colleagues in the smaller and more remote health facilities experience in using diagnostic terms from the field of psychiatry. This phenomenon may be reflected in a noticeable pattern that occurred when respondents were asked about the extent that they rely on their memory. A substantial number cited people with mental health problems as the patients they were most likely to remember rather than relying on written records.


Some data errors may be attributable to staff shortages and workload also. When frontline members of health staff are under acute pressure they make mistakes. For example, they may make entries in the wrong register – writing in the ‘children under five years’ register where they should make the entry in the’ children under two years’ register.

The challenge of data errors is further compounded by the lack of adequate and appropriate training for data clerks and other record keeping specialists. It is common for them to be transferred from other duties in the health sector with insufficient preparation. They need a good grounding in diagnostic terminology. Equipped with this they can be expected to decipher the rushed handwriting of clinicians and others. Without a prior knowledge of the diagnostic terms that they can expect to see, they may end up entering gibberish into the limited range of IT-based systems as well as in case files and registers. Unfortunately, where formal training and qualifications are looked for – in the larger hospitals especially – the emphasis tends to be on ICT rather than ICD [the International Classification of Diseases].

A further factor in the occurrence of data errors is the employment of people who are wholly unsuitable for record keeping and data capture tasks. Informants described to us how, in times of acute need, ward maids, cleaners, security personnel and volunteers from village health committees had agreed to assist. It is to the credit of the individuals concerned that they are willing to help: nonetheless their participation is a potent factor in explaining data errors.

Damage to and/or complete loss of registers is the simplest explanation for data loss. It would appear to be the most frequent also. In many facilities there are no cabinets or cupboards in which to store registers. Instead they are left lying around. On some occasions a register will be damaged by clumsy handling with the result that outer pages are ripped and fall away. On other occasions, registers may be removed from health facilities altogether. Respondents described to us how they had found registers in villages they visited: a resident had decided to take them home to show to neighbours. Less dramatic are the occasions when registers go missing inside a health centre or other facility because they have been misplaced.

In parts of the record keeping system that use IT, viruses can result in data being lost, corrupted or rendered in accessible.

IT issues and utilisation At present utilisation of IT for health information management and medical record keeping is concentrated in hospitals and especially the five central hospitals. Whilst none of the central hospitals has a fully-integrated and comprehensive system, all of them have some IT-based components. At one central hospital there are stand-alone systems for laboratories, the pharmacy, ART and neonatal care. At another there are stand-alone systems for diabetes, HIV, palliative care and TB. At a third, there is a database of patients’ basic demographic information (name, date of birth, place of residence, occupation et cetera). This range of provision is strongly suggestive of local initiative and underlines the difficulty and cost of sustaining comprehensive systems.

Some of the smaller rural hospitals possess databases of patients’ basic demographic information but some of these are not currently functioning. Where such databases work they serve, amongst other things, as name indexes for the in-patient case files.


We became aware, from information supplied by a range of informants, of a previous initiative designed to improve health information management and medical record keeping by introducing IT on a wide scale. This initiative was evidently supported by the Sector Wide Approach (SWAp) in Health at a time when bilateral aid to Malawi was at a historically high level. Following the Cashgate scandal and the withdrawal of several major donors, this initiative ceased to be sustainable. Unfortunately, we have struggled to obtain satisfactory information about the scale of the initiative and its trajectory over time. Nonetheless, it is worth reflecting on possible lessons from this experience.

It appears that the SWAp initiative involved replicating many of the features of IT-based systems as they exist in the western world. Connectivity to the internet formed part of the package. Where internet connectivity was technically difficult, mobile phones were supplied instead. These were intended primarily to be used for making monthly reports by means of SMS messages. Curiously, none of the phones was still in a useable condition after 12 months. This suggests that they were being used for purposes in addition to those for which they were intended.

At this juncture, it is necessary to refer to a recurrent pattern in the public services in Malawi, namely the excessive use of IT systems and equipment for personal and recreational purposes (Tough, 2011, Phiri, 2017). In many public organisations approximately 80% plus of server space is used for storing and accessing films and music downloaded from the internet along with personal videos, family photographs, recipes, knitting patterns and a good deal more. The available bandwidth is almost entirely used to download films and music for recreational use. One result is that official e-mail systems almost never work, forcing those public servants who wish to fulfil their duties to resort to free e-mail systems like Yahoo and Hotmail. It is against this backdrop that the views of respondents need to be viewed, for many of them did say that they wanted IT systems to be installed and access to the internet to be provided.

Other matters There are four topics that can be discussed under this heading: unethical behaviour; confidentiality of sensitivity personal data; reliance on the memory of health staff and patients; and, duplication of information and work.

Several respondents referred to unethical behaviour by health staff. The ‘leakage’ of drugs from pharmacies was a common cause for concern. There seemed to be a widespread belief that pharmacy staff diverted items from stock for their own personal benefit. This might be taking drugs to treat their own illnesses and those of their families. However, the behaviour that was most disapproved of was stealing for re-sale.

Charges of unethical behaviour against clinical staff were rebutted by a clinician who explained that in times of the greatest pressure of work, when frontline staff abandoned any attempt at keeping records, drugs were issued but not recorded. That clinical staff should be accused of stealing for re-sale was evidently a cause of indignation.

Another variant of unethical behaviour is charging for services that should be provided free. Although most respondents denied that this took place, a few made statements suggesting that it is not wholly unknown.


Unethical behaviour by patients was reported also. This consists in the main of pretending to have forgotten their health passports and then making false statements to obtain drugs. In some instances, at least, this amounts to stealing for re-sale.

Breaches of the confidentiality of sensitivity personal data were mentioned by a range of respondents. The greatest cause of concern is the lack of any means of securing registers and record cards in the smaller facilities. We were told of instances in which entire registers had been taken away and passed around a village. Against this backdrop, it is understandable that some patients with HIV or who are participating in family planning prefer to maintain as much privacy as possible by having multiple health passports. That having been said, the practice of holding ART clinics on afternoons when all other parts of a health centre are closed might be regarded as breaching confidentiality in and of itself.

We questioned respondents about the extent of reliance on the memory of health staff and patients. It was noticeable that most respondents (all of them were health staff) began by stating that they did not rely on their own memories. However, when asked to discuss the matter at greater length many modified their initial statements. In the smaller health facilities especially, regular clients become familiar to members of staff: treatment may sometimes be given even though the patient has neglected to bring their health passport. In some instances, slips of paper with the details were given to the patient so that the record could be up-dated on their next visit. Those who are attending ante natal clinics frequently were identified as falling into this category. As mentioned above, patients with mental health problems are often remembered too.

Reliance on the memory of patients was also discussed. Most respondents expressed a strong preference for the information found in health passports over information provided verbally by patients. This preference does not extend to the patient’s current illness, of course, where obtaining a description of the symptoms is part of the normal process. Interestingly, many respondents were willing to put more faith in the memories of adults who bring children for treatment than they will put faith in the memories of adults concerning their own illnesses. There was an interesting division of opinion regarding the extent that psychiatric patients could be relied on to provide reliable information about their condition.

Some respondents stated that illiterate patients cannot be relied on to remember previous episodes of care accurately. The implication seemed to be that illiterate people are uneducated and therefore of low intelligence. This seems to be at variance with academic literature that suggests that illiterate people often have better and more accurate recall than those who rely on the written word as an aid to memory (Vansina, 1965, Tough, 2012)

Where health passports have been lost or destroyed attempts are sometimes made to re-constitute the information content by having resort to case files, record cards and even sometimes to registers. Respondents did not, however, regard it as wise to rely on patients’ memories to retrospectively recreate health passports. In part, at least, this seems to be based on the inability of patients to recall accurately the dates of episodes of care. However, where patients whose health passports are lost or destroyed can state with certainty the name of the medication they have been taking, this may be accepted as reliable.


The duplication of information in parallel record keeping systems and the associated increase in the workload of health staff was described by many respondents. An extreme version of this was seen in a hospital where a discharge register is compiled and then three separate registers – one each for three diagnostic categories – are abstracted from the discharge register. This work is carried out manually. Similarly, the admission registers at some hospitals contain basic demographic data that appears also in digitised systems dedicated to functions (pharmacy or laboratories) or specialisms (TB, neonatal care, et cetera). Where the admissions register is compiled manually an element of duplication and extra work is unavoidable.

Clerical staff resent this kind of activity as a waste of their time. In most places the workload of clerical staff is high, so unproductive uses of their time are bound to be questioned. Non-clerical members of staff are apt to respond to this kind of situation by doing the work poorly or not at all. Clearly, un-necessary repetition of clerical work is a pattern that needs to be addressed.

However, it needs to be remembered that IT systems are often unreliable. Patient databases and other digital systems can be out of use for long periods. It may be essential that manual systems should continue in parallel to electronic ones, despite the unavoidable duplication of effort that this involves.

Human factors – staff and patients We spoke to the members of staff in charge of each facility wherever this was possible. In hospitals these were invariably clinicians. In the smaller health facilities they came from a range of backgrounds and included medical assistants, nurses, midwives, health surveillance assistants, medical technicians and in a couple of instances statistical clerks. It became evident that some of those posted to remote health centres and posts were not happy at being sent there. The negative effect of such postings on their marriage prospects and the absence of mobile phone connections were mentioned as factors in this respect. Reference was made to: postings that were regarded as too short; and, excessively frequent transfers between facilities.

Shortages of clerical support staff are common. This was not universal: some respondents stated that they were fortunate in having adequate clerical support. Nonetheless, the overall picture was one of frontline staff having to undertake clerical or data capture work at the expense of their core duties and in circumstances where clerical assistance would have improved service delivery. This kind of setting is particularly associated with data loss and data errors, as set out above.

Some respondents emphasised that even when clerical support staff are available, there are concerns about their training, accreditation and career progression prospects. At entry level, only a straightforward secondary education is required. Training is mainly through short courses and the adequacy of these was questioned. Particularly, it was felt that in some of the hospitals the focus is on competence in ICT rather than ICD – the International Classification of Diseases - and that the latter would be of greater benefit.

In relation to patients, respondents remarked on issues including poverty, illiteracy, stigma and population growth. The immediate impact of population growth on health services is straightforward – an increase in their workload. We were assured that in some areas population growth has exceeded 15% in less than 10 years. Illiteracy is of concern primarily because it renders some forms of public health campaigning ineffective. It produces also the possibility of patients


accidentally bringing someone else’s health passport to a health facility because they cannot identify their own. Poverty was mentioned because poorly built homes provide inadequate protection for health passports. However, it is obvious that poverty has other impacts on health and health services. An instance of these is the change in methods of treatment for severely malnourished infants. Today they may be kept at rural health facilities so that they can receive supplementary feeding before going home: previously this was not the case. The association of social stigma with HIV and AIDS is widespread around the globe.

Volunteers may be regarded as being neither members of staff (they are not paid) nor patients (they are not ill). Village health committees exist in many places and their members try to support health workers in practical ways. This is surely praiseworthy. However, it is a source of concern to find volunteers making entries in medical records. As a rule, they lack the knowledge and skills to do so accurately and reliably.


Summary of challenges Minimising workload and duplication

Our research has revealed many instances of the duplication of information in parallel record keeping systems, many of them laboriously maintained by hand. It has been made clear that members of staff are acutely aware of this pattern and resent this kind of activity as a waste of their time.

However, in the short term at least some duplication may be desirable and necessary because IT systems are often unreliable. Patient databases and other digital systems can be out of use for long periods. In some circumstances it may be essential that certain manual systems should continue in parallel to electronic ones, despite the unavoidable duplication of effort that this involves.

Health Passports

There are drawbacks to the use of health passports as a critical component of the record keeping system in health care. Crucially, in the absence of patient records kept on the premises, there is no means of cross-checking the accuracy of the returns sent to the Ministry of Health from health facilities. In addition, health passports can easily be lost, destroyed or become illegible.

Many people possess more than one health passport, primarily because of concerns regarding confidentiality. This can impact negatively on the health care they receive because a full history is not available.

It is not being suggested here that the use of health passports should be abandoned but the challenges outlined above do need to be recognised.

Registers

A considerable amount of effort and staff time goes into compiling registers throughout the health care system. Their information content has the potential to be of value in support of patient care and for local management purposes. However, at present, they serve only one purpose – to generate periodic reports. This is because they lack any effective infrastructure of retrieval. Entries are made in simple chronological order and no index is compiled.

Staff shortages and inappropriate re-deployment

Shortages of clerical support staff are common. As a result, members of frontline health care staff have to undertake clerical or data capture work frequently at the expense of their core duties. This kind of scenario is particularly associated with uncaptured data and data errors. Informants described the mobilisation of wholly unsuitable personnel for record keeping and data capture tasks: ward maids, cleaners, security personnel and volunteers from village health committees. It is to the credit of the individuals concerned that they are willing to help: nonetheless their participation is a potent factor in explaining data errors

Staff training

There is a noticeable lack of adequate and appropriate training for data clerks and other record keeping specialists. This in turn leads to an absence of appropriate accreditation and career


progression pathways. Above all, these members of staff need a good grounding in diagnostic terminology. Equipped with this they can be expected to read the handwriting of clinicians and others correctly and then to make the necessary entries accurately.

Unethical behaviour

Respondents referred to unethical behaviour by health staff and patients. The ‘leakage’ of drugs from pharmacies was a common cause for concern. Effective Health Management Information Systems and record keeping systems can, and should, help to detect and deter such behaviours.

Inappropriate use of IT

In Europe and North America, the ‘Bring Your Own Devices’ [BYOD] pattern has become normal. This involves people buying laptops, notebooks, iPads and other ICT equipment at their own expense and using those devices instead of (or interchangeably with) devices supplied by their employer to create, manage and dispose of work-related (and personal) content. This is not the norm in Malawi or in neighbouring countries.

There is a different recurrent pattern in the public services in Malawi, namely the excessive use of official IT systems and equipment for personal and recreational purposes (Tough, 2011, Phiri and Tough, 2017). In many public organisations 80% plus of server space is used for storing and accessing films and music downloaded from the internet along with personal videos, family photographs and a good deal more. The available bandwidth is almost entirely used to download films and music for recreational use. One result is that official e-mail systems almost never work, forcing those public servants who wish to fulfil their duties to resort to free e-mail systems like Yahoo and Hotmail. This situation has to be factored in to any realistic proposals for the improvement of Health Management Information Systems and Medical Record Keeping Systems.


Recommendations: Possible ways forward New approaches that use intermediate and hybrid technologies have the best prospect of delivering satisfactory long-term solutions. In other words, solutions that maximise benefit whilst minimising cost are needed. New approaches of this nature will need to be designed and tested on a limited scale - to demonstrate that they are feasible, affordable and sustainable – before large scale implementation can take place. Anybody who is tempted to feel frustrated by this multi-stage method may like to keep in mind that in the National Health Service in Scotland – in which the PI works – it has taken 60 years to find satisfactory solutions. So a 3 to 5 years development period for Malawi is reasonable.

There are two possible variants of improved and enhanced medical record keeping each of which has a realistic prospect of success. The first is a hybrid system based primarily on paper and card but with a digital database acting as a spinal column for the system. The digital database will hold essential demographic data about patients and enable rapid and accurate retrieval from the paper and card components of the system. The second is a system in which data currently held in paper based formats (registers, case files and so forth) is digitised in a stand-alone system and reporting is carried out by means of messages sent from mobile phones. Both of these options are designed to operate efficiently with minimal internet connectivity so as to avoid the misuse of IT systems for personal and recreational use.

A limited range of hospitals and smaller facilities will need to be identified (preferably located in several districts and in more than one region) that will participate in the process of designing, testing and refining one or other of the improved and enhanced systems. For the process to be successful, it is essential that participating hospitals, health centres and health posts should be enabled to employ an adequate number of properly trained clerical / data entry staff. This in turn implies: the provision of purpose-designed vocational training courses; appropriate workplace assessment of performance; and a scheme to train the trainers.


Appendix 1: List of people consulted Organisation Name Position Ministry of Health Mrs E Mabvumbe Director of Policy and Planning Mr G Kapokosa Deputy Director of ICT Mr T Banda Programmer Ms M D Chizonda Monitoring and Evaluation

Department Christian Health Association of Malawi

Dr T Dzowela Head of Health Programmes

University of Malawi Prof J D K Saka Vice Chancellor* College of Medicine Dr L Manda-Taylor Editor, Malawi Medical Journal

and Secretary to COMREC Mr D Chiweza Librarian Malawi College of Health Sciences

Mr T G Masache Executive Director

Mr P Namachotsa Registrar Baobab Health Trust Mrs M Kwataine Executive Director Mr S Mumba Director of Public health

Informatics Malawi Liverpool Wellcome Trust Clinical Research Unit

Prof S Gordon Director

Prof M Gordon Group Head, Salmonella and Enteric Disease

Dr A Terlouw Senior Clinical Lecturer, LSTM Dr I Peterson Lecturer, LSTM Mr C Masesa Data Manager Ms T Ganiza Data officer

*The research was discussed with Prof Saka during a visit to the UK


Appendix 2: Consolidated data gathering instrument (hospitals, clinics and other local facilities) About medical record keeping:

1. Do you keep written records on patients here?

[If ‘Yes’] Please show me / us what you do and explain how it works. [Possible supplementary questions regarding the source from which stationery, forms and books come and any difficulties when supplies do not arrive on time or in adequate quantity]

[If no go straight on to next question]

2. Do you make entries in patients’ health passports?

[If ‘Yes’] Please show me what you do and explain how it works [possible supplementary questions re authentication by means of signatures, initials, dates and stamps]

3. To what extent do you rely on your own memory or that of other people when dealing with patients? [Show scale Frequently – Sometimes – Rarely – Never]. [Supplementary question ‘can you give us some examples of occasions when you have relied on your own memory or that of other people when dealing with patients?]

4. Do you find that the information in records and/or health passports helps to supplement your memory? [Show scale Frequently – Sometimes – Rarely – Never] [Supplementary question ‘can you give us some examples of occasions when you have found the information in records and/or health passports helps to supplement your memory?]

5. To what extent do you expect patients to remember previous illnesses and to provide you with information verbally? [Show scale Frequently – Sometimes – Rarely – Never] [Supplementary question ‘can you give us some examples of this?]

6. Do you find that the information in records and/or health passports helps to supplement what patients remember? [Show scale Frequently – Sometimes – Rarely – Never] [Supplementary question ‘can you give us some examples of this?]

7. Are patients expected to make payments for treatment or drugs?

[If ‘Yes’] Please show me how you record payments and explain how this links to other records

8. Do you think there are problems with the existing ways of creating and keeping health records and/or health passports? [possible supplementary questions to seek clarification]


About you:

How long have you worked here?

What is your job?

Has your job changed since you started?

Observation:

We would like to sit and watch the work of your clinic. We do not want to disrupt your work.

Will it be alright if we sit here?


Appendix 3: Scheme of coding for data obtained from respondents

Code Primary code Secondary category A Confidentiality Other B Data loss Record keeping: data C Case history cards / files Record keeping D Duplication Other E Data errors Record keeping: data F Financial records Record keeping H Human factors Human factors HM HMIS: uses of data Conclusion HP Health passports Record keeping I IT issues IT M Memory Other P Pharmacy Record keeping R Registers Record keeping T Treatment pathways Introduction U Unethical conduct Other UN Uncaptured data Record keeping: data


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