Accessible medical researchBMJ 2011; 342 doi: https://doi.org/10.1136/bmj.d1190 (Published 23 February 2011) Cite this as: BMJ 2011;342:d1190
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The growing development of services such as Patients Know Best
emphasise the partnership approach whereby people choose to allow
electronic access to their information including for research. So far
most research is one sided as far as the majority of the population is
concerned. People have little access to it and there is hardly any public
information about how to find relevant information or how to weigh it up.
Certainly those without access or know how about using the internet are
disadvantaged. It would be useful if a new group of information-educators
was to be set up to enable people use information and advice on the web as
safely as possible. The service would ideally be based in places
accessible to the public - who would need to be told it exists. Using
information will still have hazards but then advice from differing
scources has always had challenges. I support the campaign running by PKB
to encourage people to hold their own medical records but still have
reservations about using any electronic data sharing system such as used
Patients Know Best - even with safeguards such as passwords. (I can
guarantee that loads of spam will arrive after submitting this as one of
the 'buzz' words seems to be 'records'). PKB is expanding rapidly though
to the benefit of both researchers and those who wish to access research
and to share their records and their experience. For those with
reservations about electronic sharing, surely though this is not the only
way to go. Maybe researchers could make themselves more visible and take
some responsibility for sharing research with the community and for
educating clinicians and public alike. ~(Reference Patients Know Best
Competing interests: i have contacted Patients Know Best for information but am not a member