We talk to Frederik Trier Møller, MD, PhD, who is Principal Investigator of the HEAP Consumer Cohort Project, based at Statens Serum Institut (SSI) in Copenhagen.

The Consumer Cohort Project will recruit volunteers to share their consumer receipts, which will help measure the impact of household consumption on health. The receipts will be linked with personal medical records held in Danish national health registries. The HEAP informatics platform, currently in development, will enable end-to-end data processing for the project, including advanced analysis pipelines and the generation of insights into the health effects of consumer habits.

Q: What stage is the Consumer Cohort Project at the moment?

A: We are currently recruiting the first cohort of volunteers, and the electronic informed consent tool is tested and fully functional. This allows volunteers to consent to transfer their individual consumer data from private receipt providers to research.

The first cohorts include an “inception cohort” made up of patients with inflammatory bowel disease. We expect several hundred patients, hopefully more, to be recruited over the next two years. We will be working with researchers in several hospitals in the Copenhagen area on this project. We also have a case control study of sporadic salmonella, and a larger “after covid-19” study, focusing on late sequelae of covid-19.

Q: How will the project work, from the patients’ point of view?

A: Patients are invited to participate in the study and sign a consent form, giving permission for their receipts, via a web page https://mineindkob.dk/en-US/home . There is a FAQ and a questionnaire to explain what the study is about and to ensure the participants have understood how it works, including their legal rights and how their data will be protected and handled in a legally compliant and ethical way. It also outlines how valuable their participation is from the point of view of medical research.

Through the digital receipts solution participants can register one or several payment cards, which will track purchases from three of the largest retailers in Denmark. The data collected from the retailers is refreshed every day, and is linked to each participant’s digital signature for the study, and their Danish Personal Identification Code.All Danish citizens have a unique Personal Identification Code (PIC), and it is this which will enable HEAP to link individual purchases to health outcomes.

Q: What have been the main challenges with this project so far?

A: One challenge is that we don’t yet know how willing patients and citizens will be to participate in the study. Our hope is to recruit thousands of patients and citizens over the next two years, and we are explaining to participants, that being able to study their data will improve our understanding of diseases and healthy lifestyles, which in turn will benefit them.

We have made great efforts to ensure that the consent model allows consumers to give specific consents for the projects that they would like to participate in. Our hope is that this will boost participation rates.

We also provide clear assurances to participants that their data will be collected on a secure server in de-identified form, their contact information will be stored on a separate server, and to ensure confidentiality, the same person will not have access to both identification and research data.

Q: When do you expect the data to be ready for researchers to access?

A: We expect that the first batch of raw consumer data will be available in autumn 2021. We will be able to begin data analysis and linking the consumer data to health outcomes in by the end of 2021. More data will become available on an ongoing basis as participants are recruited to the study. 

Q: What is the most exciting thing about this project, from your perspective?

A: This project will lead the way in monitoring how the food and the everyday products we buy affect our health. Using the HEAP platform, this project will be a proof of concept to standardize ways of collecting, storing, enriching, and analysing consumer purchase data (CPD), and hopefully, it will allow other exposome research projects to use consumer receipts or loyalty programmes in the same way.

Because data are be collected over an extended time period, I hope we will be able to find patterns that reveal the cause of diseases and maybe even prevent some diseases in the future.

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