4. Governance and local context of healthcare: education, geography, demography, cultural and socioeconomic factors

Chapter editor: Eveline Heijnsdijk

a. Governance structures and policy-making

 

i. Governance structures

Health ministries have the responsibility for the management of the national resources to the health benefit of their population by establishing fair health policies and systems. Local and regional authorities can also have a role in this process, along with other stakeholders. Equitable access to healthcare provision should be a point of attention.

In order for a screening programme to be feasible and sustainable, appropriate legal provisions may have to be in place and the governance structure should ensure quality assurance and evaluation of the screening programme. All necessary organisational, legal, logistical and financial frameworks should be adequately addressed in advance. Interaction with decision-makers and stakeholders can assure the quality at all stages of the screening chain.

Examples of the governance of screening that have been defined for cancer screening, can largely be applied to hearing and vision screening as well.

 

ii. Decision-makers and stakeholders

Stakeholders are persons or organisations with an interest in a specific policy (in this case, a screening programme). Examples of stakeholders are financial donors, national, regional or local politicians and political parties and public servants (legislators, governors, health and finance ministries, social security agency), labour organisations (unions, medical associations), private for-profit parties, non-profit actors such as[popup_anything id=”3339″](NGOs) and foundations, civil society and users or consumers (in this context, users or consumers would be parents of children to be screened).

Policy-makers and managers can undertake a stakeholder analysis to identify relevant stakeholders and to assess their knowledge, interests, positions, alliances, and importance related to the policy. This allows policy-makers and managers to interact more effectively with key stakeholders and to increase support for a policy. This stakeholder analysis guideline can be used to identify important stakeholders and document whether these stakeholders support, oppose, or are neutral towards the policy, and whether they have the power and willingness to lead an action for or against the policy. Policy-makers and managers can use the results of a stakeholder analysis to develop action plans to increase stakeholder support.

 

iii. Interaction with decision-makers and other stakeholders

To increase support for a screening programme and to work towards consensus for implementation, it is necessary to interact with decision-makers and other stakeholders. The aforementioned stakeholder analysis can be a helpful resource for strategic communication with decision-makers. When engaging in communication with decision-makers and other stakeholders, these advocacy guidelines and conflict negotiation guidelines can also be useful.

Advocacy refers to targeted actions, aimed at decision-makers and other stakeholders in support of a specific policy (in this case, a screening programme). These actions are necessary to overcome constraints that can be barriers to the implementation of a screening programme. These constraints can be political, resource-related or organisational in nature. Conflict negotiation is a communication process whereby disagreements are contained and resolved in order for parties with conflicting interests to come to mutually acceptable solutions.

 

b. Identifying existing preventive child healthcare structures and possibilities for combining programmes

Hearing and vision screening will, in most cases, only be cost-effective when combined with existing structures with high attendance (for example greater than 85%) because this reduces[popup_anything id=”3812″]and the burden on parents (less appointments) and can lead to high ‘built-in’ attendance. For example, newborn screening can be performed in a (maternity) hospital where infants stay for a short time after birth, provided the vast majority of children are born in a (maternity) hospital, which may not be the case in all countries or regions. An alternative is to combine screening with the heel prick test in the first week or vaccination in the first month. Childhood vision screening can possibly be combined with a vaccination booster around age four or five years or with (health) checks at school, since the majority of children will probably be present at these events or locations.

 

Example

In Ontario, Canada, a vision screening programme was successfully combined with an existing public health department dental screening programme. It was found that this facilitated the implementation and maximised staff resources, because the necessary infrastructure was already in place: the public health department already had a list of schools and children and already had a system for informing parents and sending letters about follow-up1.

 

When combining screening with existing structures, care should be taken that screening is implemented in a way that is similar to an organisation’s existing practices and does not require extensive adaptations. When screening is undertaken at school, for example, care should be taken that school staff do not feel their regular activities are being disrupted or their workload has increased too much.

It should also be considered that combining with existing structures can have adverse effects. Children could be burdened with multiple tests on a single occasion and thus making them less ‘testable’ which could lead to more [popup_anything id=”3347″]and unnecessary referrals. This also depends on what specific structure is chosen to combine hearing or vision screening with. For example, combining screening with vaccinations may not be ideal because many children will be anxious then and therefore may not be attentive and not in an optimal state to be screened.

 

c. Access to population data and records

Once the screening programme’s[popup_anything id=”3763″]has been defined, it is necessary to establish the target population’s size in the country or region and where the target population can best  be reached. Most countries have national statistical institutes, which generally have data available online that can be helpful. For example information on how many children are born every year, where they are born, how many are born in (maternity) hospitals, and how many children are enrolled in preschool and school and at what ages.

Parents of children born in (maternity) hospitals and children attending preschool can easily be contacted through the hospital or preschool. Should, however, in a country or region many children be born at home or few children attend preschool, alternative ways of contacting the parents will be necessary. The most obvious way would be to contact the parents through the[popup_anything id=”3361″](GP) their children are registered with. Therefore access to records of children registered with GPs (usually kept by national health institutes or health insurances) will be necessary. Certain legal provisions may need to be in place to facilitate this (see also chapter 4a).

 

d. Identifying local barriers and facilitators

i. Healthcare organisation

When the conditions for implementing a screening programme (see chapter 3) have been met, it can be assumed a country or region has an acceptable level of healthcare. When implementing a screening programme, however, it is also relevant how healthcare is organised. It is especially relevant if there are existing structures that screening can be attached to but it is also important to know if there are disparities in healthcare access. 

Screening should be available to the entire target population and so should diagnosis and treatment (see chapter 2a). It is therefore important to know if the costs of diagnosis are covered by the government, if parents will have to (partly) pay for these themselves or if these costs are covered by health insurance. Note that some countries have more than one type of health insurance, for example public and private, with differences in what is and what is not covered. If diagnosis and/or treatment are not covered, a solution should be found to provide them. Similarly, if diagnosis and treatment are covered, but a proportion of the population is without health insurance, a solution should be found to insure them since it would be considered unethical to screen children when they do not have access to diagnosis and treatment.

It is also relevant to identify possible existing mechanisms that could be used for tracking follow-up, reporting and feedback (for example common databases). If existing mechanisms are not available, these will have to be created.

 

ii. Educational systems 

Combining screening with existing structures is advisable. School can be a suitable location for screening once school is compulsory. Although this ranges between three and eight years, in many countries school is compulsory from age six. For vision screening, this may be too late as this is preferably done at ages four or five years (see chapter 1-e-ii). If school starts at six years, vision screening could perhaps better be combined with preschool. However, if [popup_anything id=”3341″]is not compulsory, attendance rates may be lower than school attendance rates. In such a case, the cost-effectiveness model can assist in calculating the most optimal scenario: either preschool, with lower attendance but better prospects for treatment, or primary school, with higher attendance but worse prospects for treatment. If preschool attendance is very low an alternative may be needed.

In some countries or regions, preschools and/or primary schools have resident nurses to take care of children’s health. If this is the case, they can be trained to screen. If there are no nurses at preschools and/or schools, another cost-saving option could be to train non-healthcare volunteers or professionals, for example teachers, to screen. This is quite common in some countries, but it should be noted that reports on the quality of screening by[popup_anything id=”3363″]vary. There are studies that indicate that non-healthcare volunteers can be trained to perform screening at an acceptable level of accuracy2. However, studies find substantial differences between various lay screeners when it comes to sensitivity and specificity. These differences could be explained by variations in tests and referral criteria used, ages of children screened, personnel involved and the training provided3. Some experts are of the opinion that training, evaluation, support and experience are more important for screeners than specific professional background.

 

iii. Geography and demography

When implementing a screening programme, geography and demography should be taken into account. Within a country or region, differences between densely and sparsely populated areas are relevant. A screening programme will be more difficult (and therefore more expensive) to implement in a sparsely populated area since it will require more effort to reach the whole population. In addition, there may be relevant differences in demographics between for example urban and rural areas, although these differences may not be the same everywhere. In Eastern Europe, for example, rural areas are generally poorer than urban areas while in Western Europe and the United States so-called inner cities tend to be home to low [popup_anything id=”3336″]populations. In large cities, there will also be relevant differences in demographics between various areas of the same city.

In areas with an ethnically heterogeneous population, it should also be noted that substantial differences have been found between ethnic groups in the prevalence of both several vision disorders and various forms of hearing impairment4 5.

Infrastructure should also be a point of attention. In remote areas, roads may be in a poor state, making these areas hard to reach and some areas may be impossible to reach in winter, for example, because of weather conditions.

 

Example

During the first year of the implementation of a newborn hearing screening programme in Albania, 32.4% of infants with a ‘fail’ outcome in the first screen did not attend the second screen and 34.4% of the infants with a ‘fail’ outcome in the second screen did not attend the third screen.

In addition to common reasons for loss to follow-up (LTF), a country-specific reason could be that parents come from all over Albania to give birth in maternity hospitals in Tirana. When they returned home with their child, it was too difficult for them to come back to Tirana to repeat the screen because of the distance between their home and the hospital and the time and cost required to cover this distance.

 

As with all aspects of implementing a screening programme, the local situation should be thoroughly investigated. All local circumstances should be assessed for their implications for screening, so that the programme can be tailored to take these into account. It is very important to make sure that a programme is adapted to and embedded in the local context. Top-down policy-making that ignores diversities between communities in history, geography and so forth, is unlikely to be successful6.

 

iv. Cultural and socioeconomic factors

Conditions that children are screened for will, by definition, most likely not be detected by parents, as children with the target conditions can often function normally on a day-to-day basis. Parents therefore need to be aware that their children may have hearing or vision problems even though they cannot notice these themselves and that these problems are serious enough to warrant early detection and treatment. Communication to parents is therefore of the utmost importance (see also chapter 7c and chapter 10). Parents’ awareness of the importance of screening, and their attitude towards screening, are highly relevant to the success of a screening programme7.

Differences in language and culture can hamper effective communication and be significant barriers to healthcare access8. It is therefore advisable to investigate whether a screening population is linguistically and culturally homogeneous and, if not, to be aware of such differences and the implications these may have for a screening programme.

Practical issues aside, minority groups, especially marginalised ones, may be less receptive to preventive healthcare and therefore harder to reach. People belonging to[popup_anything id=”3365″]groups often distrust institutions and also face other barriers in accessing healthcare9. In low[popup_anything id=”3336″]communities particularly, people may fear health interventions will incur costs. Even when a medical service is nominally free, in many countries or regions some form of ‘informal payment’ is expected10 or alternatively people may assume that they are not eligible without insurance11. Additional measures may therefore need to be incorporated into a screening programme to reach such groups.

 

Example

There are several communes (groups of villages that together form an administrative unit) in Cluj County where a large part – in some cases even the majority – of the population speaks Hungarian as their first language. In others a substantial part of the population are Roma, a quarter of whom are nonreaders. Some 34% of Roma in Cluj County also do not speak Romanian as their mother tongue. 

In some kindergartens, a Romanian speaking nurse was unable to communicate with the children to be screened, and bringing in a translator introduced additional problems.  A leaflet in Romanian is unlikely to be of much use to either group and translated information was not available.

 

Inequitable access to screening is a common issue in preventive healthcare. A consistent finding across various screening programmes is that participation is lowest among the most socially deprived12. Providing equitable access to a screening programme therefore deserves attention. Low SES is the most important determinant of low health literacy13 and low health literacy is a significant determinant of screening uptake14. Groups with low SES often overlap with ethnic minority groups.

It is important, when implementing a screening programme, to identify and address health inequalities. One method of doing this is to perform a health equity audit (HEA) to examine “how health determinants, access to relevant health services, and related outcomes are distributed across the population”.

 

 

Aside from access to screening, it should also be noted that low-income populations experience barriers to follow-up. These barriers are related to costs needed for transportation and treatment but also related to family problems, lack of faith in test results, difficulties with written communication and difficulty in planning ahead15. Additionally, poor compliance with treatment of problems with visual acuity has been associated with social deprivation16. Maternal education level is a predictor of hearing aid use time in children with mild to severe hearing loss17.

It is not uncommon for screening programmes, from California18 to Peru19, to include measures to maximise follow-up, by including for example free transport, diagnosis and treatment for children whose parents cannot afford these. It should be kept in mind that such measures will incur additional costs. Possible strategies to increase follow-up and treatment include more health education, more personalised communication and better coordination between the different parts of the care pathway.

 

 

e. Legal considerations: patient rights, informed consent and personal data

Patient rights

Patient rights are different across countries and jurisdictions, depending upon cultural and social conventions. At least four different models of the physician-patient relationship are distinguished by the [popup_anything id=”3354″]in North America and Europe alone: paternalistic, informative, interpretive and deliberative. Many countries have some form of formal definition of patient rights, in law or otherwise20.

In spite of the aforementioned differences, there is a growing international consensus that patients are entitled to:

    • privacy
    • the confidentiality of their (children’s) medical information
    • to be informed about relevant risk of medical procedures
    • to consent to or to refuse treatment

 

 

Informed consent

The last two points together constitute what is known as ‘informed consent’. This is “a process by which the treating health care provider discloses appropriate information to a competent patient so that the patient may make a voluntary choice to accept or refuse treatment”21. 

 

 

For hearing and vision screening in children, generally parents’ informed consent will be required, as children will lack the legal competence to provide informed consent themselves. Children’s assent should be obtained, whenever possible (in case of newborn screening, it is obviously not possible).

 

Opt-in or opt-out

Consent can be obtained in two ways: opt-in or opt-out. Opt-in consent relies on parents actively consenting to the screening, by either bringing their child to be screened, or signing a consent form for their child. Opt-out consent assumes that all children will be screened unless the parents actively request otherwise. Technically, this is only possible if all parents are fully informed of what the screening process entails and are made aware that their child will be screened, unless they object.

Opt-out consent is associated with higher uptake of screening, especially in regions where there is low awareness or uptake of community public health services. Opt-out policies when accompanied by adequate community awareness and knowledge can normalize the perception of the screening process and increase acceptability. An additional advantage of opt-out consent is that it lessens a programme’s administrative burden. In an opt-in service, the children most at risk of undetected poor vision (low SES or parental education levels) are the ones whose active consent and attendance are most difficult to obtain. Requiring signed consent forms can be a significant barrier to screening access. Consent forms can be burdensome to keep track of, for screening staff, parents and children. In some contexts, language and literacy may be issues that would require translations or additional forms of communication. Additionally, there is the risk that forms may get lost or are forgotten22.

 

Personal data

When registering personal data, applicable rules have to be followed. In the EU, the regulation commonly known as the [popup_anything id=”3326″]prescribes how personal data has to be handled. Any organisation that processes personal data in the EU must comply with this regulation. Under the GDPR, processing of data is only allowed if there is a justification for it. For screening programmes, the most obvious justifications are article 6-1-e (processing is necessary for the performance of a task carried out in the public interest) and article 9-2-h (processing is necessary for the purposes of preventive or occupational medicine). The existence of a justification for processing data means that a subject’s active consent to process his or her personal data is not required (but subjects still have to be informed their data are being processed, and made aware of their rights concerning the processing of their data).

 

 

Even with a justification for processing data, there are strict rules that apply to handling personal data. Appropriate technical and organisational measures have to be implemented to protect personal data. Very important is ‘pseudonymisation’: “the processing of personal data in such a manner that the personal data can no longer be attributed to a specific data subject without the use of additional information, provided that such additional information is kept separately and is subject to technical and organisational measures to ensure that the personal data are not attributed to an identified or identifiable natural person”.

 

 

Note that outside the EU, different rules apply and applicable local laws should always be consulted before setting up a data registry. The majority of countries have data privacy laws (132 as of 201923), often similar to the GDPR or even based on it, such as Brazil’s Lei Geral de Proteção de Dados. In some jurisdictions, formal approval of a specific body may be required before setting up a data registry is allowed.

 

next chapter

 

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