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Bridging genomics and healthcare: A survey on genomic data in Electronic Health Records (EHRs)

We at KU Leuven in collaboration with The National Institute for Health Development (NIHD) (Estonia) are conducting this survey as part of the Joint Action Prevent Non-Communicable Diseases (JA PreventNCD) project, which aims to reduce the burden of cancer and other non-communicable diseases (NCDs) in Europe, much of which is preventable. JA PreventNCD supports strategies and policies that address both personal and societal risk factors for cancer and NCDs. The general objective of the work package we are participating in is to reduce the burden mainly at the personal level, by providing guidance on integrating information from genetic determinants, demographic, and behavioral characteristics (individual-level factors) into a holistic approach for cancer and NCDs prevention (WP10 information JA PreventNCD). This survey seeks insights from EU health institutes and organizations on the integration of genomic data into electronic health records (EHRs). EHRs are a digital, comprehensive collection of a patient's health information stored in a secure, networked system that can be shared across different healthcare providers and settings. The integration of genomic data into EHRs holds significant potential for improving healthcare delivery. It could enable more personalized treatment, enhance diagnostic precision, and support early identification of disease risks. Additionally, it could facilitate access to genetic information within clinical workflows and contribute to research and innovation in precision medicine.


The aim of this survey is to understand current practices, assess feasibility, identify barriers, and explore opportunities for collaboration. Your input will help inform future strategies to support the responsible and effective use of genomic data in healthcare systems.

Note:
If you are already implementing any of the topics addressed in this survey within your organization or would like to implement these topics, we kindly ask you to briefly explain how this is currently being done or how you envision doing so in the future.
If you are not currently implementing these practices, we would still greatly value your perspective on these topics.

Before continuing with the survey, please take a moment to read the information letter which explains the purpose of this study, how your data will be used, and your rights as a participant. In case of questions, do not hesitate to contact us.
Information letter GDPR


We sincerely thank you for your time and contribution.
Marte Berckmans, PhD student ; KU Leuven (Belgium)
Gert Matthijs, clinical laboratory geneticist ; UZ Leuven (Belgium)
Kaire Innos, cancer epidemiologist, The National Institute for Health Development (NIHD) (Estonia)
Mahsa Shabani, associate professor in health privacy law and innovation ; University of Amsterdam (The Netherlands)

This survey is anonymous.

The record of your survey responses does not contain any identifying information about you, unless a specific survey question explicitly asked for it.

If you used an identifying access code to access this survey, please rest assured that this code will not be stored together with your responses. It is managed in a separate database and will only be updated to indicate whether you did (or did not) complete this survey. There is no way of matching identification access codes with survey responses.

Privacy policy

INFORMED CONSENT

 

Title of the research:

Bridging Genomics and Healthcare: A Survey on Genomic Data in Electronic Health Records

Researcher + Supervisor:
Marte Berckmans, PhD student; marte.berckmans@kuleuven.be
Gert Matthijs, medical-genetic laboratory specialist; gert.matthijs@kuleuven.be
Department of Human Genetics

Goal and methodology of the research:

KU Leuven, in collaboration with the National Institute for Health Development (Estonia), is conducting this survey as part of the Joint Action Prevent Non-Communicable Diseases (JA PreventNCD) project. The aim of this project is to reduce the burden of cancer and other non-communicable diseases (NCDs) in Europe, much of which is preventable.

This survey focuses on the integration of genomic data into electronic health records (EHRs). We seek to understand current practices, assess feasibility, identify barriers, and explore opportunities for collaboration. Your input will help inform future strategies to support the responsible and effective use of genomic data in healthcare systems.

Participation is voluntary, and responses will be collected anonymously. The survey includes questions about:
- Current practices regarding genomic data and EHRs
- Perceived challenges and opportunities
- Potential areas for collaboration
At the end of the survey, you will be redirected to a follow-up survey where you can optionally provide your contact details if you wish to stay informed or participate in future initiatives.

Duration of the experiment:
The questionnaire will be active for 1-2 months.

  • I understand what is expected of me during this research.
  • I know that I will participate in the following trials or tests:

I am partaking in a survey focused on professional insights regarding the use of genetic information in electronic health records (EHRs) or similar systems. The survey takes approximately 15 to 20 minutes to complete. The survey includes multiple-choice questions, matrix questions, and open-text questions.

  • I know that my participation may be associated to risks or discomforts:

Your participation does not involve any physical risks. Completing the survey may, to a limited extent, prompt reflection on organizational practices or strategic decisions related to genomic data integration, which could lead to mild feelings of uncertainty or discomfort for some participants. Participation is entirely voluntary, and you may stop at any time without any consequences.

  • I or others can benefit from this research in the following ways:

This research will help identify current practices, challenges, and opportunities for integrating genomic data into electronic health records (EHRs). The insights gathered can inform future strategies and policies, leading to improved healthcare delivery, more personalized treatment, and better prevention of cancer and other non-communicable diseases. Participants may also benefit by contributing to shaping collaboration and innovation in precision medicine.

  • My participation offers a contribution to the scientific research. I know that I will not receive any further reward or compensation for my participation.
  • I understand that my participation to this study is voluntary. I have the right to stop participating at any time. I do not have to give a reason for this and I know that it will not have any negative repercussions for me.
  • My personal data will be processed in line with the General Data Protection Regulation (GDPR). Only the data that are strictly necessary to achieve the research objectives will be processed. My data will be kept confidential at all times throughout the study and the researchers will take measures to protect my privacy. For example, my personal data will be pseudonymized, meaning that my data can no longer be linked to me without the use of additional information that is only accessible to the researchers. I understand that my pseudonymized data may be reused for other scientific research and possibly for teaching or academic lectures. More information about the processing of my personal data can be found in the attached information letter.
  • In case of further questions about the research I know that I can contact:

Marte Berckmans, PhD student; marte.berckmans@kuleuven.be; Department of Human Genetics

  • This study has been reviewed and approved by the Social and Societal Ethics Committee (SMEC) of KU Leuven. In case of complaints or other concerns with regard to the ethical aspects of this research I can contact SMEC: smec@kuleuven.be
  • I know that I can contact the individuals/organizations below if I would experience any discomfort or difficulties as a result of some of the subjects that were the topic of this research:

Marte Berckmans, PhD student; marte.berckmans@kuleuven.be; Department of Human Genetics

 
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