Patient organisations

Sharing personal health data will result in better health care for individual patients and for society as a whole

New diseases, ageing populations and the rising cost of health care provision are putting pressure on our health systems.

At the same time, we see promising evolutions such as cutting-edge health research, the development of revolutionary technologies and innovative techniques, new and more effective treatments and medication.

These health innovations are often data-driven. 

Individual patients can not only benefit from this exciting progress but also contribute to the enhancement of public health

How sharing personal health data can benefit patients

Discover four major advantages:

Better coordinated and higher-quality health care More empowerment in the management of our own health Faster development of new medical products and treatments More efficient organisation of health care

Health care is becoming more and more complex and specialised. Besides our GP, we are likely to consult one or more hospital clinicians, home care or social care workers and other health professionals, either for personal health issues or for a close relative. Or we may need emergency care in another region of the country or abroad where swift access to our essential health information may be crucial to determine the outcome of the treatment we need.

When all of these health professionals have access to our up-to-date health data and are aware of the treatments we were prescribed by other members of the care team, they will be able to provide higher-quality and more personalised care. Better coordination will make care provision safer and more efficient as it will make it possible to reduce medical visits, avoid redundant exams and prevent duplicate or even conflicting treatments.

With the rise of data-driven health tools such as wearable devices, remote monitoring, mobile health apps and shared electronic health records, people are more closely connected to tracking their own health.

Having access to our health data, provides the insights to better manage our health. This understanding will give us a stronger voice interacting with our care team to jointly make the best decisions and to define an appropriate care plan taking into account personal priorities.

Being an informed partner in our own care will also boost motivation to carefully follow up on medical instructions and adopt the necessary lifestyle changes.

Moreover, active patient engagement has proven to lead to better health outcomes and better care experiences.

Researchers and clinicians need large quantities of health data to understand disease, its causes, its progression over time, the treatments that have been (un)successful.

The analysis of health data of millions of people helps them to forecast health trends, to speed up diagnosis, to discover new and more effective treatments, medicines and medical technologies, to personalise care, to roll out Artificial Intelligence (A.I.) applications.

The health data susceptible to boost health research has often been routinely collected in electronic health records kept by clinicians, but also in population registries, and more recently through mobile health trackers, bio sensors, etc.

Conversely, patients may be invited to participate in clinical trials for researchers to gather very targeted health data, opening opportunities for patients to get acces to the newest medical advancements.

Hospitals and other health care providers are facing the ever harder challenge of delivering high-quality but cost-effective services in an increasingly complex health care environment.

Health authorities and funders are forced to ensure sustainable, future proof care strategies, carefully balancing budgets against increasing demands.

The analysis of great quantities of health data can help health care providers to improve quality and safety, efficiency and performance, planning and care pathway optimisation.

Public health decision makers can rely on big data analysis to produce evidence for policy and resource planning, for public health surveillance and strategy.

How health privacy is protected

People may worry about the privacy and security of their sensitive health information.

  • How can access to personal health data be limited to authorised persons?
  • What measures do health data users take to safeguard their ICT infrastructures against cyberattacks?
  • Will personal data not be used for other purposes?

There are legal, organisational and technical precautions to protect the identity of individuals when data is used, such as the General Data Protection Regulation (GDPR), ethical codes of conduct, rules for anonymizing data, access controls, audit trails etc.

As it is our ambition to foster legitimate trust in data sharing, we have developed expertise to assist all stakeholders to comply with regulatory requirements and ethical standards.

More on information governance

Be part of our neutral health data community

Are you interested in learning more about the benefits of sharing health data?

Do you want to get in touch with other health data stakeholders, discover novel approaches, learn from each other and boost collaboration to maximise joint value from health data?

Get in touch with us

Testimonials

The patient’s voice on the importance of innovation through health data

Karl Wouter
medinet.tv

1 July 2020

Many patients are eager to share their health data to help speed up the development of new treatments – if this can be done in a trustworthy way.

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Mitchell Silva
Patient advocate, EUPATI

21 September 2017

Patient engagement in clinical research: transparency is key. Patients show a lot of willingness and interest but there is always the aspect of trust.

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Mary Baker – Past President of the European Brain Council

9 March 2016

A better understanding of disease and new treatments is of critical importance to society. Patients and healthy citizens alike should support better uses of their health data.

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Robert Johnstone
A patient

9 March 2016

I fully support better use of health data for research, to discover new treatments and other forms of health care, provided that assurances can be given that the data are well protected and governed.

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Petra Wilson – Managing Director of Health Connect Partners

9 March 2016

Patients need to be better informed about their health data and in decisions being made about their health and care. Patients’ lack of knowledge limits the value we can all obtain from health data.

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i~HD