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People 'don't trust'
NHS with personal data
MORE than a 3rd of people do not trust
the NHS with their personal information through fears it could be lost, stolen
or handed to private companies, a poll has found.
A total of 56% of the 2,000 people surveyed in the inaugural National Personal
Data in Research Survey would also stand in the way of advances in medical
science by not allowing their data to be shared for research.
Experiences of sharing details with the health service and attitudes towards
taking part in research have been laid bare in the survey commissioned by a
European wide campaign called:- 'eTRIKS' to increase the sharing of patient data
among studies, which is calling for a new "smarter approach" to the collection
of research information.
The project is looking to improve the reuse of medical research data.
When asked if respondents trusted the NHS with their personal data, 64.35% said
they did but 19.65% were unsure and 16% said they did not.
Only 43.70% would be happy to share their medical data in the pursuit of
research, yet 26.25% said they would not hand over their details and 30.05% were
not sure.
Also, a total of 21.6% said their personal data had been shared without their
apparent consent, while 38.15% were unsure and 40.25% said that their details
had not been taken.
The eTRIKS project; a collaboration between 17 partners, including leading
pharmaceutical companies, research organisations and Universities; is now
urging a new culture of greater willingness to support medical scientists.
It comes after a data sharing event which took place at the EU Parliament on 20 October 2016.
Research standards expert Paul Houston, co-lead for the eTRIKS standardisation
initiatives and 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. But to support our new smarter
approach to research, we also need a new culture where research participants and
the general public understand and are part of the solution."
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:- "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 1 hour every month and there is also the
opportunity to get involved online." |
