Identifying key priorities for research to protect the consumer with food hypersensitivity: A UK Food Standards Agency Priority Setting Exercise

Abstract

Introduction Food hypersensitivity (FHS), including food allergy, coeliac disease and food intolerance, is a major public health issue. The Food Standards Agency (FSA), an independent UK Government department working to protect public health and consumers’ wider interests in food, sought to identify research priorities in the area of FHS. Methods A priority setting exercise was undertaken, using a methodology adapted from the James Lind Alliance—the first such exercise with respect to food hypersensitivity. A UK‐wide public consultation was held to identify unanswered research questions. After excluding diagnostics, desensitization treatment and other questions which were out of scope for FSA or where FSA was already commissioning research, 15 indicative questions were identified and prioritized by a range of stakeholders, representing food businesses, patient groups, health care and academia, local authorities and the FSA. Results 295 responses were received during the public consultation, which were categorized into 70 sub‐questions and used to define 15 key evidence uncertainties (‘indicative questions’) for prioritization. Using the JLA prioritization framework, this resulted in 10 priority uncertainties in evidence, from which 16 research questions were developed. These could be summarized under the following 5 themes: communication of allergens both within the food supply chain and then to the end consumer (ensuring trust in allergen communication); the impact of socio‐economic factors on consumers with FHS; drivers of severe reactions; mechanism(s) underlying loss of tolerance in FHS; and the risks posed by novel allergens/processing. Discussion In this first research prioritization exercise for food allergy and FHS, key priorities identified to protect the food‐allergic public were strategies to help allergic consumers to make confident food choices, prevention of FHS and increasing understanding of socio‐economic impacts. Diagnosis and treatment of FHS was not considered in this prioritization.

Beliefs about food allergies in adolescents aged 11–19 years: A systematic review

“…This may assist with the prioritisation of confident food choices as a protective measure for people with FA, as highlighted in a recent survey by the Food Standards Agency. 42 With the introduction of oral immunotherapy treatments (OIT) for FA, 43 it is important to balance beliefs and understanding that while we are making great strides in FA treatment, we do not yet have a cure. OIT has been found to be making great improvements in quality of life in adolescents with FA, leading to greater dietary choice, reduced anxiety, and increased social inclusion.…”

“…Where possible, greater information about food production, regulations and the labelling process from food businesses and food guidelines may encourage adolescents to take labels seriously and reduce scepticism. This may assist with the prioritisation of confident food choices as a protective measure for people with FA, as highlighted in a recent survey by the Food Standards Agency 42 . With the introduction of oral immunotherapy treatments (OIT) for FA, 43 it is important to balance beliefs and understanding that while we are making great strides in FA treatment, we do not yet have a cure.…”

‘Too high, too low’: The complexities of using thresholds in isolation to inform precautionary allergen (‘may contain’) labels

“…Most foods with a PAL statement do not contain detectable levels of the identified allergen, whilst some products without a PAL do have UAP, which can pose a significant risk of allergic reaction 3,7 . A recent research prioritization exercise, undertaken by the UK Food Standards Agency and involving all relevant stakeholders (including consumers with food allergy, members of the general public, clinicians and researchers, representatives from the food industry and regulatory organizations), highlighted the need to improve use of PAL as a key priority, to allow consumers with food allergy to make informed decisions as to whether a food is ‘safe’ for purchase/consumption 8 …”

“…3,7 A recent research prioritization exercise, undertaken by the UK Food Standards Agency and involving all relevant stakeholders (including consumers with food allergy, members of the general public, clinicians and researchers, representatives from the food industry and regulatory organizations), highlighted the need to improve use of PAL as a key priority, to allow consumers with food allergy to make informed decisions as to whether a food is 'safe' for purchase/consumption. 8 In theory, the need for PAL could be informed by 'action levels': when the level of potential UAP is above a certain concentration (known as an action level), this would trigger the use of PAL; no PAL would be needed if levels were equal to or lower than this cut-off.…”

Patient‐oriented allergy

“…The inclusion of patient voices in these decisions is supported by the work of charities such as the James Lind Alliance, who have developed a methodology for prioritizing research questions in specific disease areas using a partnership approach between patients, clinicians and researchers. In this journal, we recently published the first priority‐setting work in food allergy undertaken using James Lind Alliance methodology 2 . Such exercises often reveal overlooked areas of research, which are important to patients and their carers.…”