Norway’s New Health Data Sharing Platform: A Boost for Patients & Pharma


Norway has been a global frontrunner in collecting health data and building unique registries for decades but has struggled to utilise and benefit from them. Karita Bekkemellem, CEO of the Association of the Pharmaceutical Industry in Norway (LMI), examines how a new health data sharing platform can change that— to benefit both patients and the pharma industry.


Although it has spearheaded the gathering of health data for many years, Norway has seen its position as a leading global player in this area being overtaken, despite political ambition to continue leading the line.

The country is now in the final stages of approving a “national solution for accessing health data,” a plan aiming to ensure fast and reliable access to health data— a solution essential to develop Norway’s competitiveness in the health field.

The data already gathered in Norway’s registers today has the potential to place us at the top table globally

While Norway has been working on developing solutions, other countries have invested heavily in e-health infrastructure, and have consequently leapfrogged us. Our competitors have launched access solutions, adapted for specific research programs, and have begun collaborating with international researchers and key stakeholders in business and technology.

Importantly however, the data already gathered in Norway’s registers today has the potential to place us at the top table globally, changing both how new treatments can be implemented for Norwegian patients, as well as increasing Norway’s position for clinical trials, production, and general value creation in the pharma field.


Why is it Important?

Increased use of health data will provide benefits for society through a more efficient and quality-assured health care system, better patient involvement, better health management and resource utilisation, in addition to significant innovation and business development.

In the healthcare system, automation and digital solutions replacing tasks that have previously been done manually can increase efficiency. Most importantly, health data provides new ways of diagnosing and treating patients and thus increases the quality of treatments offered.

Health data can provide insight and knowledge to employees, making it possible for the Norwegian health service — which is already of good quality — to achieve even better results. As an example, health data can provide insight into how many patients have a specific disease, the age composition of the patient group, and how the disease affects life expectancy.

One can also gain greater insight into treatment patterns; what treatment the patients receive at the onset of the disease, what treatment the patients receive if the first medication stops working, and how long patients are treated with the various medications.

This is essential information as it is of great importance highlighting the use of resources spent working with each disease and treatment, in a health service already stretched for manpower and financial resources. Health data can provide insight into what works and what does not and can therefore ensure a sustainable and dynamic in and out phasing of medicines, allowing hospitals to manage their efforts according to what has an effect and benefit for patients.


A Changing Industry

For the pharmaceutical industry, data is a gamechanger when developing products, as well as getting products to the patients. In Norway, the health authorities’ documentation requirements related to new products can result in delayed access for Norwegian patients. However, health data can contribute to limiting the uncertainties surrounding new, modern and advanced therapies and thus ease the authorities’ concerns around implementing the product.

Additionally, good access to health data will be important for the ability to attract clinical trials and other research and development projects to Norway. For example, our health registries can quickly clarify whether a clinical study is feasible in Norway or not. Do we have patients who are relevant for the given studies?

Going forward, rather than focusing on traditional drug production and marketing, pharmaceutical companies will place a larger emphasis on new approaches that rely on technology to meet the demands and expectations of both users and payers.

There is more than meets the eye in the pharmaceutical industry. Beyond the production and sale of medicines, our industry is increasingly focused on developing a drug and linking it with digital health technology.

Society, patients, and businesses will gain from the use of health data

One example can be patient support programs that can increase patient outcomes and benefit the entire health ecosystem. These initiatives create win-win situations, patients get more than just a pill, while pharmaceutical companies can build on the data and feedback they receive to subsequently develop better treatments.

The industry analyses anonymous health data to find new treatments and new goals for existing treatments, such as better efficacy and fewer side effects. There are still thousands of diseases for which there are no treatments – yet. Health data are vital in the research and development of new medicines.

Society, patients, and businesses will gain from the use of health data. Norwegian politicians must therefore ensure that the national access solution for health data becomes a reality, launching Norway into a new digital health age— benefitting both pharma development as well as patients.

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