Cost of commercial protectionism in child health research

As someone with a background in both public health research and homeless services, I was recently approached by a group of voluntary agencies working with homeless families to assist them in conducting a research project to investigate the mental and physical health status of children passing through their services. The personnel involved were alarmed by what they saw as the largely undiagnosed, unmeasured and unmet needs the children presented. As part of my public service obligation as an academic, and having an interest in the topic, I readily agreed to help on a pro bono basis.

Attempting to identify a useful health measure threw up the routine issues of a lack of standardisation in assessment, a lack of national normative data, and the dearth of child health measures covering both mental and physical health. However, after an extensive search, two potential measures were identified. The first was the 50-item Parent Form of the Child Health Questionnaire (the CHQ-PF50), ¹ which is suitable for older children, and the second was the Infant/Toddler Quality of Life Questionnaire (ITQOL) ² for younger children.

This project was launched in response to real children’s needs in the Irish context of voluntary agencies operating on shoe-string budgets, in an era of tightening budgets, a reduction in a government expenditure of over e6 billion in the next financial year, and a bail out from the International Monetary Fund and European Union.

The next barrier was the fee for the use of the proposed measures. Although some may accept the need to charge fees as a commercial reality, it could equally be argued that a wider appraisal, incorporating good publicity, exposure, a worthy cause, and publications/citations may be equally valuable in the long term.

However, putting the issues of fees aside, two points in the proposed licence agreement with the licencing company, HealthActCHQ, were very disturbing. The first prohibited the development of the measures. HealthActCHQ stated that all ‘developmental work is undertaken exclusively by our scientific team’. The second issue of concern was the prohibition on developing normative data for Ireland. This restriction was explicitly stated: ‘HealthActCHQ does not allow anyone to undertake iterative work, such as the development of normative data’. It should be noted that no Irish normative data for either of these measures are available and, as far as can be ascertained, there is no ‘work in progress’.

It could be conceivable that through this commercial protectionism quality may be sacrificed for profit in the field of child health research. Companies in the psychometric and child health field are possibly stifling developments and improvements for commercial reasons. Furthermore, attempts at precision to overcome geographical, national, cultural, linguistic and temporal differences in normative scores are ignored and sacrificed.

Academics and clinicians need to be wary of health measures that may be suboptimal as a result of blatant commercial protectionism. Peer review and continued development are quality hallmarks that should not be swept aside lightly. Academics and clinicians need to cooperate to develop open-access ³ standardised measures of child health status and matching normative data. Such a united focus would inevitably benefit all concerned, particularly those most in need.