Why use and re-use health data?
Health data has proved to be a crucial enabler in the development of innovative health, care and research solutions.
This process was facilitated by new digital ways for collecting, storing, exchanging and analysing health data, meaning it can be re-used a second time, and more, not only by the person who collected the information but also by other clinicians, researchers and health authorities.
We need to learn more from health data
How do diseases and treatments interact?
Which treatments give the best results?
How do we improve care pathways?
Is this new medicine safe?
Who should we screen for which diseases?
How are new viruses transmitted, treated?
Health data interplays in several fields, not only providing for the safe continuity of care to the individual patient, but also creating insights for optimizing the effectiveness of health systems and boosting research.
Individual level health data
- individual health status monitoring
- personalised medicine
- safe continuity of care by multi-disciplinary teams of health and care professionals
Population level health data
- quality and safety management
- improved care outcomes
- health care provider performance management & planning
- public health surveillance & strategy
Big health data
- disease understanding, prevention and treatment
- innovations: new medicines & technologies, AI development
Sources of health data
When hearing about health data, most people think of the medical information that is introduced in their health records during visits to their GP or hospital. But there is more. Health data registration is all around and rapidly growing:
- through remote monitoring devices prescribed by health professionals
- over personal tracking devices such as fitness apps or dietary monitoring
- to major national health databases.
Trustworthy use and re-use of high-quality health data
The exponential growth of health data will allow for life-saving breakthroughs
if we manage to make good (re-)use of good data.
Demonstrated health improvements through using data in one health care system (*)
decrease in heart disease deaths
decrease in HIV deaths
decrease in septicaemia deaths
decrease in pressure ulcers
Reliable re-use of data
Real-world health data is usually captured and structured for its primary objective of providing safe and personalised care to each individual patient.
It needs to be fit for the intended re-use purposes!
Some critical requirements for optimal re-use involve the quality, the interoperability and the trustworthy handling of health data.
Quality of health data
- Is the health data that is being analysed accurate?
- Is it representative of the population under scrutiny?
- Has it been introduced in a consistent and correct way?
- How can organisations assure that they protect people’s privacy when handling personal health data?
- How can organisations successfully integrate GDPR regulations into daily routines?
- How can health data be safely handled through trustworthy health ICT systems?
TRUSTWORTHINESS OF HEALTH ICT SYSTEMS
- How can health ICT systems that handle data be conceived and used in ways that meet the highest data privacy requirements?
- Does the system function as it was meant to function?
seals, certification & BENCHMARKING
- What types of quality assessment audits can ascertain that an organisation that is treating health data does so in trustworthy ways ?
- What is the value of a label or a certificate?
data interoperability standards
- Is there a clear definition of how data should be mapped and transferred from one health ICT systems to another?
INTERACTION BETWEEN STAKEHOLDERS
- How can stakeholders share challenges and solutions to scale up the uses of health data?
As a multi-stakeholder organisation, i~HD can leverage understanding and facilitate scaled-up, judicious data sharing and re-use.
Learn why health data is important for each stakeholder group
Patients, caregivers, patient representatives, citizens and population health / prevention organisations
- When all your health professionals have access to your up-to-date health data, they are able to provide more efficient, higher quality, safer and more personalised care and care coordination.
- When you have access to your health data, you can better manage your own health.
- Health data provided to scientific research will speed up the development of new medical products and treatments for individuals who need them.
Judicious use of health data will boost health care providers’ ability to become learning health systems and facilitate:
- the delivery of safer evidence-based care and improve health outcomes
- a more efficient use of health care resources
- participation in more clinical research and allow for more inhouse research
By analysing great numbers of health data, health policy makers and funders can:
- give recognition to high-quality and value-based care
- better guide ongoing healthcare and prevention programmes
- improve public health strategy and plan for the future
Pharmaceutical and life science organisations are bringing health care research and innovation to a higher level through the analysis of high-quality real-world data and research data. They therefore:
- need to raise awareness of the importance of re-using health data
- demonstrate the trustworthiness and privacy-compliance of their own data handling and systems
- collaborate with data providers whose data and systems have been validated as well
- The implementation of interoperability standards has become vital to facilitate the transfer of health data between health ICT systems and the sharing of health data for secondary use.
- Certification organisations perform audits so as to provide an objective evaluation of the trustworthiness or quality of health data or health ICT systems used by research platforms, health apps, governments, care professionals etc.
With a growing interest in sharing and re-using health data and the rise of new digital health technologies, the health ICT industry is challenged by an increased demand for value-added interoperable solutions for the trustworthy capture, management, exchange and analysis of high quality data.
Whether the aim is to participate in clinical research, to build and share knowledge, to respond to local and nation-wide health challenges or to prevent sickness and disease, high-quality and trustworthy health data catalyses the opportunities for academics and research centers to stay on top of their game.
Health & data strategy organisations provide both operational and strategic advice, business intelligence, data warehouse services etc. The quality of these services is directly linked to the presence and the trustworthiness of health data.
The growing importance of health data has led to new opportunities for the data-driven industry: wearables, AI, brokerage services … In order to gain wide-spread credibility and trust, this sector needs to meet strict requirements and produce evidence related to their trustworthiness and the quality of the data they use.
(*) Presented by the CEO of Kaiser Permanente during a conference keynote