Healthy Finland consent form

On this page you will find the information leaflet and the consent form for the national Healthy Finland survey. At the end of this page, you will also find information about the Biobank consent form.

On this page:

Information leaflet on the Healthy Finland survey

Healthy Finland – National survey of health, well-being and service use

The Healthy Finland survey aims to produce up-to-date information on the health and welfare, and the factors affecting them, of adults living in Finland. Participating in the survey provides you with important knowledge about your health. It also allows you to make an impact with your input on the prevention of diseases and care research, the promotion of functional capacity and welfare, and the improvement of health and welfare services. The survey is carried out by the Finnish Institute for Health and Welfare (THL) as a part of its statutory duty, the monitoring and research of population health and welfare. Similar studies have already been conducted since the 1960s. The Healthy Finland survey has received a favourable statement from the Research Ethics Committee of the Hospital District of Helsinki and Uusimaa (HUS/900/2022).

Please read this information leaflet carefully. If you have any questions, you may contact the research personnel by email or telephone. Find their contact information at the end of this leaflet. Read more about the Healthy Finland survey at thl.fi/healthyfinland. You will receive more information about the survey and get to ask questions in connection with your research appointment.

Voluntariness of participation, cancelling participation and withdrawing consent

Participation in the survey is voluntary. When you participate in this survey, we ask you to fill out the consent form in advance electronically. Alternatively, you can fill out a paper consent form during your appointment.

You may refuse to participate in the survey, cancel your participation or withdraw the consent you have previously given without having to give any reason at any point during and after the survey. In this case, you should contact the research personnel (contact details at the end of this leaflet) or the THL registry [kirjaamo(at)thl.fi]. In this case, your samples or information will no longer be used as a part of the research data. However, any examinations started before the arrival of your withdrawal notification may be completed. A refusal to participate in the survey, cancelling your participation or withdrawing your consent will not affect your status as a healthcare client.

What do we study and why?

The Healthy Finland survey monitors and studies the health, welfare and services of the entire population and its demographic groups and any changes occurring in the above areas and related factors and anticipates future development. Information from the survey can be used to improve the efficiency of preventing and treating illness, promote Finns’ functional capacity and their welfare, and develop health and social services to respond to citizens’ needs in an optimal way.

Who can participate in the survey?

You have been randomly sampled for the survey based on data obtained from the Digital and Population Data Services Agency. You were already previously asked to fill out the Healthy Finland survey questionnaire on health, welfare and service use which was sent to 66,000 residents of Finland aged over 20. Of them, 10,000 were asked to participate in a health examination, including you. Every person selected to the sample represents their age group in their region. Only people chosen to the survey can participate.

How is the survey being carried out?

The Healthy Finland survey includes a health examination performed in practice by experienced and trained healthcare professionals. Your general condition and health status will be taken into consideration in the health examination. If a certain measurement or test makes you uncomfortable or you don’t want to participate in them, they can be left out. The health examination will take about 1.5–2 hours and includes:

  • measurement of your height, weight, and circumference of waist, hip and neck
  • measurement of your blood pressure twice
  • assessment of your functional capacity based on various simple tests (getting up from a chair, hand grip strength, eyesight and memory, attention and concentration, and for those aged over 55, joint mobility and hearing)
  • a pulmonary function examination (spirometry test), in which you will be first asked to hold your lungs full of air and then blow into a spirometry device. Spirometry measures lung volume and air flow to the lungs.
  • venous blood sample, before which you may not drink or eat for 4 hours The sample is examined for
    • fat and sugar values
    • values that provide information about liver and kidney function
    • vitamin D content (25-OH-D) and hormonal activity (thyroid hormone levels TSH and T4v, testosterone)
  • a hair sample from those under 55 years old (a small bunch of hair with the diameter of around two strands of spaghetti) that a survey nurse will cut from the back of your head
  • questionnaires to measure health, lifestyle and functional capacity. You can fill them out during the health examination and/or at home (either electronically or on paper).

You will also be asked to participate in one or more measurements and/or examinations presented below. You will receive more information about these examinations later during the health examination and be instructed on how to proceed. People have been selected randomly for these examinations.

  • an activity sensor survey is used to examine physical activity, sedentary periods and sleep based on a journal and an activity sensor worn on the wrist for a week
  • dental examination to examine oral and dental health X-ray imaging will also be performed on some of the research subjects (a bitewing radiograph that examines dental cavities or a panoramic dental radiograph)
  • an interview on drinking habits that investigates your alcohol consumption habits, carried out by telephone or videoconferencing
  • a stool sample, for which you will collect a small amount of faeces in a vial
  • 24-hour urine sample, for which you will collect all urine secreted over a 24-hour period in a collecting container.

To reliably assess population health and welfare and examine the factors affecting these, your information from the health examination and surveys may be linked to data from various national registers in order to compile important information on factors affecting health and welfare. Data will be linked from the following controllers: The Social Insurance Institution of Finland (data on medicine purchases, paid benefits and reimbursements), Statistics Finland (data on socio-economic status, causes of death and family), Finnish Centre for Pensions (data on pensions, rehabilitation and employment relationships), Tax Administration (taxation data), Digital and Population Data Services Agency (name, date and place of birth, address information, gender, marital status, mother tongue, citizenship, family information) and the Ministry of Economic Affairs and Employment (data on employment and related measures). The samples collected in connection with the health examination may be later used to make definitions with key significance to public health (e.g. risk and protective factors of chronic diseases) and investigate the genetic background of chronic diseases. The use and processing of data is more clearly described in a privacy notice.

If you like, you can give your consent to a separate biobank survey, in which case your sample and data may be transferred to the THL Biobank. More information about the biobank survey will be provided in a separate biobank leaflet. You may participate in the health examination of the Healthy Finland survey even if you did not participate in the biobank survey.

Research implementer and financier

The survey is carried out by the Finnish Institute for Health and Welfare (THL). A large group of specialists representing various fields from universities and research institutes participated in planning the survey. THL is the main financier of the survey. All of the examinations and measurements performed in the Healthy Finland survey are free of charge to the research subjects.

Potential benefits and risks of the survey

You will get feedback on the results of your health examination. You will receive some of your measurement results already during your appointment (e.g. blood pressure, sight and hearing, grip strength, pulmonary function examination). More extensive feedback on your examination results in the form of a personal health profile will be sent to you around 2–4 months after your participation. In addition to your survey responses and laboratory results, the profile includes information about your risk of developing a chronic illness later in life. The health profile includes information about your results as well as reference or target values as well as information about what to do if you have abnormal results. If you have been invited to additional examinations, you may also receive feedback on them.

Your personal health profile will be sent to you by email using an encrypted email system (secure email). This makes it important that you will also fill out your contact details, including your email address and telephone number, when confirming your health examination appointment. You can also receive the feedback on paper by mail upon request. If you do not wish to receive your personal health profile, we ask you to check the box “Tick this box if you do not wish to receive the results of your personal health examination (personal health profile)” or contact the research personnel.

We aim to carry out this survey in a way that makes participation as easy for you as possible. You may find blood sampling slightly uncomfortable. However, blood sampling from the veins in the bend of the elbow is a routine procedure performed by a health care professional. The sampling typically goes well, but sometimes it may be difficult to extract a blood sample. If you find sampling extremely uncomfortable or there are problems, we will not extract a sample.
The dental examination may include an x-ray (a bitewing radiograph that examines dental cavities or a full panoramic dental radiograph), which may also detect an illness not visible in an external examination. The radiographs are safe and not uncomfortable. The amount of radiation emitted during the panoramic radiograph corresponds to the background radiation you receive from the environment over two days and the bitewing radiograph to the background radiation of one day. The panoramic dental radiograph will not be performed if you are pregnant or a similar radiograph has been performed on you within the previous six months.

If you have any questions about the potential harms and benefits of the survey, you may always contact the research personnel (contact information at the end of this leaflet). You may also ask the research personnel about issues related to the survey during the health examination.

Insurance cover and reimbursement for research subjects

THL has taken out insurance for the research subjects from Pohjola Insurance under the Patient Insurance Act. In accordance with the Patient Insurance Act, patient insurance covers any personal injuries caused in connection with healthcare and medical treatment based on prerequisites laid down in more detail in the Act. The Patient Insurance Centre is in charge of processing reimbursements for patient injuries.

No remuneration is paid for participating in this survey. The health examination appointment and the examinations described in this leaflet are free of charge to you. In connection with the health examination, we offer a snack and a small bag of products as a thank you for participating in the survey.

Processing of personal data and confidentiality of data

All parties and people involved in processing your data are bound by a confidentiality obligation.

All the collected data will be processed confidentially and in compliance with the General Data Protection Regulation. The data will be stored in a database which may only be accessed by the research group. No direct identifying data of the participants, including name, personal identity code and address will be visible in the processing of the research data. More information on the processing of your personal data and your rights can be found in the survey’s data privacy notice.

THL engages in research cooperation with Finnish and international research groups. The research data may be transferred to the partners in a form that prevents the direct identification of individual participants.

The research results will also be published in a manner that does not enable the direct identification of individual persons.

More information and contact persons

If you have any questions about the survey, you may contact the physician responsible for the survey or other research personnel. You may contact them to discuss any issues on your mind related to the survey.

Docent Annamari Lundqvist
Principal investigator, Healthy Finland survey
THL Population Health Unit

Chief Physician Lara Lehtoranta
Responsible physician, Healthy Finland survey
THL Population Health Unit

Helsinki, 1 November 2022

Contact details for the Healthy Finland survey

Email: tervesuomi(at)thl.fi
Telephone (free of charge): +358 (0)800 97730 (weekdays between 8 am and 11 am and 3 pm and 5 pm)

More information about the Healthy Finland survey: thl.fi/healthyfinland

Healthy Finland survey consent form

I have been asked to participate in the above survey that aims to monitor and examine population health, welfare and services and any changes to them, related factors and future development. I have read and understood the leaflet and give my consent to the survey described in it. I have received enough information about the purpose and implementation of the survey, the benefits and risks of the survey, data collection and processing, and my rights. I have had enough time to consider whether to participate in the survey. I have not been pressurised or persuaded to participate in the survey.

I understand that participation in this survey is voluntary. I am aware that I have the right to refuse to participate in this survey. I may withdraw my consent at any time without having to give a reason. Withdrawing my consent will not affect my status as a healthcare client. I am aware that no compensation is paid for participating in the survey. I am aware that my data will be processed confidentially and will not be disclosed to third parties. THL engages in research cooperation with Finnish and international research groups and my data may only be transferred to these parties, including non-EU/EAA countries if my identity cannot be directly identified from it. I understand that my data will be processed and research results will be published in a manner that does not enable directly identifying me.

With my signature, I confirm my participation in this survey and give my voluntary consent to serve as a research subject.

Participant’s signature: 
Date:
Participant’s name in block capitals:
Participant’s date of birth or personal identity code:
Participant’s address:
Participant’s email address Participant’s telephone number:

  • Tick this box if you do not wish to receive the results of your personal health examination (personal health profile).

Consent received

Nurse’s signature:
Date:
Name in block capitals:

The consent form will be archived at THL. You will receive a copy of the signed consent form.

Information leaflet for Biobank sample donors

This leaflet provides information about biobanking and explains what giving a biobank consent means.

Summary

  • Biobank stores samples of human origin, and information related to the samples and sample donors for medical research and development.
  • Biobanking and the rights of the sample donors are regulated by the Finnish Biobank Act (688/2012) and the Data Protection Act. The biobank follows good ethical practices in its operations.
  • Samples and related data are stored in the biobank for long periods of time, even decades. Samples and related data are typically released from the biobank with research codes without personal identifiers.
  • Giving biobank consent is voluntary. The consent can be withdrawn at any time without explanation.
  • The sample donor has the right to inquire from the biobank in which research projects his/her samples and data has been utilized.

THL Biobank and the purpose of biobank research

Biobanking creates a high-quality and regulatory-controlled framework for medical research. The aim of biobank research is to discover the mechanisms of diseases and how genes, lifestyles and the environment affect the onset of diseases. Results obtained from biobank research may help in prevention of diseases and to develop safer, more effective, and personalized treatments. The biobank primarily supports research activities and no direct benefit to the sample donor is usually expected. Therefore, health care is still the primary address to turn to if you have health-related problems.

THL Biobank’s activities support the statutory functions of the Finnish Institute for Health and Welfare (THL). Samples and data stored in THL Biobank can be used in medical research that aims to promote population health, identify factors affecting the mechanisms of diseases, prevent diseases, or develop products and treatment practices that promote population health and well-being or are used in health care. The purpose of THL Biobank is to compile a significant research resource for future research on samples and data collected from the Finnish population, since finding factors that affect health often requires large data sets as well as long follow-up time, sometimes even several decades.

Samples and data stored in the biobank

Samples and data stored in the biobank include biological samples (e.g. blood samples, DNA, cells, saliva), information obtained directly from the sample donor (on lifestyle and diet, for example), measurements (e.g. blood pressure, height) and results determined from samples (e.g. cholesterol level). Biobank can also store genetic information produced from the stored samples.

For biobank research projects, biobank samples and data may be linked to data of patient registers, national social welfare and health care registers (e.g. Care Register for Health Care, Cancer Registry), Statistics Finland's registers, Kela’s registers (e.g. Drug Reimbursement Registers) as well as from other biobanks. Combining registry data with biobank data can provide important information on the incidence of diseases and the effectiveness of treatments.

The data is provided to researchers in coded form, without personal identification. Only those who are legally entitled to process your personal data may process it.

Access to samples and data and data protection

THL is responsible for secure processing of samples and data in a manner that does not compromise the privacy of the donor. Access to samples and data stored in the biobank can be granted to domestic and international research projects, including countries outside the EU and EEA (e.g. the United States, Australia) where the statutory level of privacy protection might be different. The privacy of individual sample donors is protected by allocating a coded identifier to samples and data, and by strict access agreements that define the terms and conditions for sample and data usage and handling. Full privacy protection is difficult to achieve e.g. in genetic research, but in practice genetic information can be linked back to the sample donor only if the operator is already in possession of the sample donor's genetic and personal information from another source. Identifying an individual sample donor based on the coded information is next to impossible. THL Biobank does not sell samples or information to any third parties. However, it may charge the researcher a fee to compensate for work and expenses. Research results obtained using biobank materials can also be used for commercial applications, such as development of new medical products, devices or therapies. Samples and data stored in the biobank cannot be used in criminal investigations, or in administrative, recruitment or insurance processes that involve the sample donor. Unauthorized use of biobank data is a criminal offence.

Possible future requests for recontacts

In the consent form, THL Biobank asks permission to recontact you later as possible donor, if additional samples or data are collected for a new research project. You are also asked to consider whether the biobank can contact you in the case the analysis of your biobank sample reveals significant health information that may be useful to you, such as a serious risk associated with a drug or disease. Any results obtained in research laboratories must always be confirmed by an accredited health care laboratory using a fresh sample. You can decline contacts from the biobank by indicating this in the consent form.

Consent withdrawal and restrictions

The consent is valid until further notice. You have the right to withdraw or change your consent or restrict the use of your samples and data at any time and without explanation, by sending a written notice to THL Biobank. Following the withdrawal, your samples and data will no longer be utilized in new research projects. However, any ongoing studies that were initiated before your withdrawal, can be completed. It may be necessary to temporarily store samples and information even after you have withdrawn your consent to verify, for example, the accuracy of the research results.

Right to receive Information

You have the right to inquire from the biobank

  • Whether or not samples taken from you, or data related to you are stored and handled in the biobank and if yes, the basis of storage
  • From where the stored samples and information has been obtained
  • To where and to which kind of research projects biobank has provided your samples and data
  • Results determined from your samples in biobank research, and an explanation of the significance of the results. The biobank may charge a fee for providing such information, based on the actual costs of the work.

Where do I get more information?

For additional information on current biobank research, please visit THL Biobank's Web pages. These pages also include information on the organization of THL Biobank, contact details, and instructions on how to receive information stored about you in the biobank. You can also call to THL Biobank´s service number on 029 524 6073 (weekdays from 9 am to 3 pm).

Biobank consent form

By signing this form, I acknowledge that I have read and understood the THL Biobank’s information leaflet for biobank sample donors, and voluntarily consent to the following:

Samples and information concerning me collected in connection with the Healthy Finland Survey can be

  • transferred to THL Biobank, linked to each other, and stored and processed in the biobank
  • linked to data in other registers as described in THL Biobank’s Information leaflet
  • transferred in coded form to countries outside the EU and EEA (e. g. the United States) for biobank researchusing appropriate data protection measures

In addition, I authorise the biobank to contact me (please answer yes or no):

  • To inform me of findings, based on my samples, which are of significance to my health
    • Yes
    • No
  • To inquire whether I would like to provide additional samples or information or participate in research thatthis consent does not cover
    • Yes
    • No

I have received sufficient information on the subject to give an informed consent, and I understand that my participation is voluntary. I understand that I am free to withdraw my consent and prohibit the use of stored samples and data at any time by submitting a written notification of this to THL Biobank for the address: THL Biopankki, Tunnus 5022238 , 00003 Vastauslähetys (no postal charge)

Details of the person giving the consent:

First and last name:
Personal identification number:
Address:
Date:
Place:
Signature:

Receipt of the consent form:

Date:
Place:
Signature:
Name in block capitals:
Title:

Updated: