Debate: Health data saves lives

By Dean Allan Flyvbjerg, Universities Denmark; Managing Director Morten Freil, Danish Patients; CEO Adam Wolf, Danish Regions and CEO Ida Sofie Jensen, The Danish Association of the Pharmaceutical Industry (Lif) 

When citizens come into contact with the healthcare service, their top priority is to receive treatment of high scientific quality. If this wish is to be met, it is necessary to make use of health data in clinical research and daily quality assurance activities. 

In general, Danish citizens are willing to share their treatment and health data and there is also widespread trust that this data is secure when it is passed on to researchers. This trust must be safeguarded so that data can also be collected in the future and used for research and quality improvements.

Denmark has some of the world's best health registers, clinical databases and biobanks, which provide a unique opportunity to conduct research which benefits patients. Developments in digitalisation also mean that the amount of data is increasing sharply. This offers completely new opportunities to develop tailored treatment for the individual patient.

In Denmark a wide range of information is collected. This information can provide useful knowledge on the path to new treatment methods, but also on obsolete treatment principles, medical errors, side effects of drugs and treatments that are already in use, or perhaps unknown favourable effects that we were not aware of when a new drug was approved. In this way, the data helps save lives and offers the possibility of developing new treatments for the benefit of future generations.

Recently there have been more stories in the media about the abuse of the public's personal data. Unfortunately, these stories activate the public’s data anxiety and this risks leading to political decisions on the collection and handling of data which would in reality make research and quality improvements impossible.

But why not make this voluntary? Why not let people decide whether they will make their health data available for research?

Our concern is that a requirement for e.g. informed written consent will in reality destroy this opportunity. There is no doubt that we need to ensure that patients receive as much self-determination as possible over their own data. We need to go as far we can without compromising the possibility of carrying out good research and quality improvement.

The reason we in Denmark have come as far as we have in the development of new drugs and new forms of treatment is that we can combine different health information in our research. This opportunity is important because we can work with the entire population and not just the resourceful people who voluntarily participate in our research. It we only base research on voluntary data and people who are alive, then the pathological picture – and by extension the treatment – can easily become skewed.

We who work with health matters in patient organisations, in the Danish regions, the pharmaceutical industry and at the universities, can see how the utilisation of health data benefits patients.

When data from the individual citizen's doctor appointments, medical treatment or operation is registered, it can subsequently be used in anonymised form to tell about the development of diseases, about the effect of new treatment methods and about what works and what does not.

Access to health data enables us to develop new medicines and reduce the side effects of medicines that are already in use. The quantum leap in cancer treatment over the past few years has been created on the basis of data from previous patients. Progress in the treatment of e.g. cardiovascular disease, diabetes and arthritic diseases has taken place on the basis of, and by virtue of, the access to health data which health professionals and researchers have enjoyed.

If a group of researchers receive access to health data, this does not give them access to the individual citizen's health journal or a chance to delve into the individual patient's medical history. The researchers receive access to a complex dataset based on data from many people, sometimes even hundreds of thousands. It is not the case that a researcher can find a specific citizen with name and address and read their medical history. Furthermore, access to the data is subject to statutory regulation and it is only possible when the necessary regulatory approvals have been obtained.

Data can provide us with new knowledge about how we should be treated and who will benefit from a given treatment. The results primarily provide better treatment of patients, but also contain the potential for a more effective healthcare service, as new and valuable knowledge makes it possible for us to avoid unnecessary studies or ineffective treatments. But there is also a large socio-economic benefit for society in being able to provide more targeted and tailored treatment for the individual citizen.

It is crucial that data contributes to quality assurance, research, collaboration, the patient's involvement in the treatment and good operation. A high level of security in the handling of health data is required, so that people can trust that their data will not end up in the wrong places.

Danish Regions has launched a policy on Health Data in Play that aims to ensure that patient data must be handled securely and that it is utilised better with a view to the best treatments. At the same time, you as a citizen should also have better access to your own data, so that you are better informed of your state of health and thus will have a better opportunity to influence your own course of treatment.

For the pharmaceutical industry the use of data primarily provides the basis for the development of effective and safe drugs and medicinal products. Health data is a tool that can improve the efficiency of development of new and improved drugs and lead to a safer use of those already in use. In addition, the use of health data can contribute to a positive development in the number of jobs – and to attracting research investments – in the pharmaceutical industry.

The pharmaceutical industry commits itself to the common goal of actively using registries and biobanks to conduct high quality research and to develop new treatments for the benefit of patients and the healthcare service. In this context there is no doubt that the universities play a crucial role in the processing and handling of health data. This applies both in the role of supplier of unique research results which can be implemented in everyday clinical practice for the benefit of the patients, and as a valuable and respected partner in public-private partnerships, which can create new knowledge and new progress in the treatment of patients.

There is great potential in utilising Danish citizens’ personal data. We must all contribute to making certain that the use of health data takes place in an ethically responsible manner, so that people continue to trust that their data is secure and is being utilised for useful purposes.

On the basis of the above, we recommend three things:

First of all that politicians should ensure there is legislation that continues to allow the secure collection and use of data where this makes clinical, quality-related and research sense.

Secondly we recommend that all academic environments which are involved in the collection, storage and handling of health data and bio-materials, have a clear framework for the utilisation of health information.

Thirdly that citizens are given a general picture of what their data is used for via clear rules and good information. Citizens must be able to trust that their data will be used to save lives both today and in the future.

Failure to provide this will be a major setback for the Danish healthcare service, which will therefore not have the opportunity to develop and offer treatments of the highest quality for the benefit of both patients and the country’s economy.

The feature article was published in Jyllandsposten Saturday 14 August 2015