Further medical breakthroughs including cures to cancers and other long-term conditions could be possible if more people took part in research.
That’s the claim from a European-wide campaign to increase the sharing of patient data among studies, which is calling for a new “smarter approach” to the collection of research information.
It comes as new data rules from the European Parliament are set to be adopted across the continent in a bid to strengthen and unify data protection for individuals within the European Union (EU)
Research standards expert Paul Houston, a spokesman for the eTRIKS project – a collaboration between 17 partners, including leading pharmaceutical companies, research organisations and universities – is urging a “new culture of greater willingness” to support medical scientists.
The comments have been made ahead of a data sharing event taking place at the EU parliament next month. eTRIKS has also just released a list of top tips for people involved in medical research to improve public knowledge about the field.
Mr Houston, who is the Head of Operations for CDISC Europe Foundation, a not-for-profit organisation campaigning for standards in research data, said: “Medical research continues to provide more and more breakthroughs, resulting in improvements to the lives of millions of people across the world.
“However, in 2012 there were an estimated 8.2 million deaths from cancer in the world, but with more research further medical breakthroughs, including cures to cancers and other long-term conditions, could be possible.
We want to create a new culture of openness in research, making the sharing of data much easier and opening up more opportunities to pursue medical advances.
We are working towards further embedding robust patient data practices to enable smarter research where data is shared between scientists, leading to more and more advances in medicine as we continue to push the barriers of science. But to support our work we also need a new culture of greater willingness from research participants and the general public.”
As part of the eTRIKS, a patient engagement event on the value of data will be staged on October 20 at the EU parliament to help assure the value of medical research data.
The project is supporting researchers to make the most out of the medical research data they generate by making it easier to combine and use data collected from different studies with new ones.
This is being done through the provision of open source software, services and guidelines. The eTRIKS team is also working to preserve data that has been generated.
Funded by the Innovative Medicines Initiative and the EU, eTRIKS stands for the European Translational Information and Knowledge Management Services.
Pierre Meulien, Innovative Medicines Initiative (IMI) Executive Director, said: “Medical researchers rely on data from patients to advance our understanding of diseases and develop new treatments. By bringing together different stakeholders in research, projects like eTRIKS are well placed to facilitate the use of this data to advance research while respecting patients’ wishes and addressing wider ethical and legal issues.”
Patient advocate Marije Kootstra, who has asthma and supports research projects and the Dutch Lung Foundation, believes more people should take responsibility in advancing medical science.
The 22-year-old student, from Groningen, said: “I think if more data was shared it would support the researchers to make more breakthroughs, that’s why I am supporting the eTRIKS project. If you standardise data then it can be shared by researchers not just within their field of expertise, but also across different disease areas.
If you want something to change and you are unhappy with the way things are going in healthcare then get involved so your voice can be heard. Your involvement doesn’t need to take that much effort – I meet with a group for one hour every month and there is also the opportunity to get involved online.”
Top tips for people involved in medical research
1. Sharing your data is caring: Medical research datasets almost always have relevance beyond the initial study for which they were collected.
2. Make your data available: The availability of medical data is a bottleneck in making advances in disease understanding and developing treatments.
3. You can have data without information, but you cannot have information without data. Integration of information is key. Patient data that can easily be explored by translational researchers is valuable information.
4. Allow your data to be re-used for medical research: Ask yourself how to strike a proper balance between data privacy concerns and the value of data. Re-using data maximizes its value.
5. Ask if data standards will be used: Being able to compare data is fundamental to a good data, yet standards are often not used. If you are going to take part in a trial you want to be sure the maximum value is obtained from your data.
6. Help the community speak with one voice: Be heard by policy makers, let people know that sharing data is important.
7. Ask your doctor or patient organization how you can get involved to participate in a meaningful dialogue around patient data protection, reuse and patient engagement.
8. Develop your awareness using patient education on patient forums.
9. Sign up to the eTRIKS Manifesto and stay tuned about meaningful patient engagement in multi stakeholder research collaborations to fight for data protection and refining the medical research landscape.
10. Get involved! Getting people to participate in studies is not always easy, but these are the foundation for medical advances
11. Shared data is valuable data – Yes, people are often concerned about what happens to their data. But sharing your data with trusted research organisations is vital to research.
12. Speak to the experts: It is easy to find information online, but don’t rely on this as your only source. Speak to the doctors or nurses involved in medical research to find out more about what happens to your data
13. Be socially responsible: Encourage your friends to take part in study trials, the whole point is to improve peoples lives
Notes to editors
• For further details, for pictures or to arrange an interview, email firstname.lastname@example.org or call 07803 003811 or 01604 882342.
• eTRIKS is a project that is funded to support research projects in their efforts to make the most out of the medical research data they generate. eTRIKS operates under the principle that ‘integrated and explorable data are valuable data’. The aim is to reduce the effort needed to combine different types of data and making collected data from one project usable in other research projects. There are also ongoing efforts to preserve the data that has been generated. All this is being achieved through the provision of open source software, services, and guidelines.
• For more information on eTRIKs, visit: https://www.etriks.org