As always, let us know what you think - if there are more recent / complete / credible studies out there which draw different conclusions, let us know!
Engagement and participation
The UK has a long history of public support
for health research, as evidenced by the large number of participants in
clinical trials and population studies (For example, the UK Collaborative Trial
of Ovarian Cancer Screening and UK Biobank have recruited their targets of
200,000 and 500,000 individuals (respectively) with minimal objection to the
use of their healthcare data) and the generous contributions to medical
research charities such as Cancer Research UK and the British Heart Foundation.[1]
Public engagement initiatives in relation to
specific issues, such as the use of patient data, generally show that research
is warmly supported. The attitudes of over 1,000 adults towards participating
in health research were examined in the Wellcome Trust Monitor survey.
Seventy-one per cent of participants indicated that they would be willing to
give blood or tissue samples for research and 62% were willing to test a new
treatment for a disease from which they were suffering.[2]
Evidence from two national research studies
demonstrates that a small number of patients complain about receiving direct
invitations to participate in research. The UK Collaborative Trial of Ovarian
Screening is one of the largest ever randomised controlled trials, covering 13
NHS Trusts in England, Wales and Northern Ireland, with successful recruitment
of more than 200,000 women. Of the 1.2 million women invited to participate in
the study only 32 complained about being contacted. UK Biobank reported from
its integrated pilot phase that approximately 1 person from 1,000 invitations
indicated that they did not want to participate because of concerns that their
contact details had been provided to UK Biobank by the NHS.[3]
There are a large number of organisations
working to improve patient and public engagement with health research,
including (but not limited to) UK Clinical Research Collaboration (UKCRC),
INVOLVE, regulators themselves, the medical Royal Colleges, research charities
and disease specific patient groups working to help the public understand the
role and importance of research as an integral part of the care system.
Media view – data protection
The influential role of mass media has important
implications for the formation of public opinion and consequently public
behaviour and the actions of policy makers. The most significant impact on
attitudes towards the storage, transmission and use of personal data in
healthcare is made by coverage of breaches of regulations and guidelines.
Storage and transmission of data are key to research, many
large datasets (for example the national disease registries) inducting data
from a variety of sources and releasing data for research to geographically
dispersed users. A key aspect of the conduct of research is the ease with which
those researchers can receive the data. The choice of transmission method is
not driven solely by actual risk analysis: while
an encrypted DVD has a high level of innate security, public perception of
sensitive information being moved around on DVDs, memory sticks and laptops is an important
consideration. In fact it was a major issue identified in the UK Ministry of
Justice's report on Data Sharing, 2008.[4]
A recent article from eWeekeurope.co.uk backs up perception
with data under the inflammatory headline “A Freedom of Information request by…
Software AG has revealed that most public sector bodies have no idea about
secure data transfer.”[5] The
article cites recent examples of the loss of sensitive information by public
bodies: “A couple of
years ago, Her Majesty’s Revenue and Customs (HMRC) lost a number of CDs
containing private information on thousands of people. But there have been many
more recent examples. Last July the UK Ministry of Defence admitted it had lost an entire server from a secure building – as well as 1.7 million individuals’ personal data. In
November the UK Rural Payments Agency (RPA) lost backup tapes containing the payment
and banking details of 100,000 farmers in the United Kingdom. And only last month an NHS worker in the secure mental
health unit of a Scottish hospital was suspended, after he lost a USB
stick containing patients’ medical records. The USB
stick apprently contained unencrypted sensitive information – including the
criminal histories of some violent patients at the Tryst Park unit at Bellsdyke
psychiatric hospital. The stick was later found by a 12-year-old boy in the car
park of an Asda supermarket.”
The NHS was recently
(April 2010) revealed by the Information
Commissioner’s Office (ICO) to be responsible for
the highest number of serious data breaches of any UK
organisation since the end of 2007. David Smith, deputy commissioner at the ICO
told the Infosec security conference the NHS had highlighted 287 breaches to it
in the period, accounting for more than 30% of the total number reported.[6] Most of
the breaches were the result of stolen data or hardware, followed by 82 cases
of lost data or hardware. Richard Vautrey, the deputy chair of the British
Medical Association's GPs committee thinks the number of breaches reflect the
size and complexity of the NHS (the UK's largest employer with 1.7m staff) as
well as its culture of openness.[7] Whilst
comments in the BBC’s coverage mention in mitigation that the public sector’s
culture of reporting all breaches contrasted with the private sector’s
behaviour, these do little to lessen the impact of the headline: “NHS worst for
data breaches.”
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