While we are still working on our 'Funders' Policies on data sharing' article we decided to post here a summary of recent work on patients' attitudes to participating in medical research - again, a primer on the current state of play in clinical research in the UK selecting choice elements from recent reports; check out the footnotes for interesting sources to follow up. Part 2 will cover Engagement and Participation and will be followed by a piece on medics' attitudes to research. 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!
We also came across a tweet today from Simon Denegri
linking via his blog to
an NIHR site containing video testimonials of the experiences of patients, nurses and doctors taking part in or working on clinical trials which is worth a look too. Apologies for the bizarre formatting of the bullet-points below!
The following
bullet points are extracted from the text of the report “The Use of Personal
Health Information in Medical Research General Public Consultation” which
presents the the findings of a programme of research carried out among the
general public by Ipsos MORI on behalf of the Medical Research Council (MRC)
published in July 2007 with the aim of “Identifying public concerns and
misconceptions surrounding the secondary use of personal health information for
medical research.”
In summary they found that
there was low public awareness of medical research, that the public were in
general supportive of research when informed about it and when they felt in
control of their data – but continue to have reservations about privacy:
·
“The advantages of medical research are seen by the
public to far outweigh the disadvantages. Seven in ten feel the merits of
research outweigh the disadvantages, compared to only 6% who say the opposite.”
·
The qualitative phase of this consultation showed
that there was little public awareness and understanding of medical research
(and thus the use of secondary health information for medical research
purposes), who undertakes it and to what ends.
·
“The workshops indicate that, if the public is informed about what medical
research entails, they are generally positive towards it. Communications are key to building
public trust… Key to effective
communication on the subject is the need to keep terminology simple.”
·
The quantitative phase of the research showed that
“Just over a third (34%) cannot think of any associations with the phrase personal health information, which
indicates fairly low awareness for the MRC to address.”
·
“Perceptions of who, or which organisations people
feel would hold personal health information focus mainly around the health
service [GPs, hospital doctors and the NHS]. Medical researchers (working in
any capacity) are mentioned by less than 1% of the general public.”
·
“If the public feels in control of their
information and its potential uses, then they are likely to be more inclined to
allow their personal health information to be used for medical research
purposes…The qualitative research shows that the main public concerns are over
organisations sharing this information, particularly for commercial gain….
Medical researchers working in the public sector i.e. for Government and
universities (both trusted by 11%) are more trusted than their counterparts
working for private companies (4%). The private sector features prominently
among the least trusted organisations where personal health information is
concerned.”
·
“While most see the benefit of personal health
information being used for medical research purposes, the very same people can
hold reservations over the implications for privacy…. The most common reason
for being unlikely or certain not to allow personal health information to be
used for medical research purposes is concern
over privacy (28%).”
·
“The two key pillars of anonymity and consent
feature highly in the debate over what information should be available, to
whom, and in what circumstances. These two themes are central to building
trust.”
·
“The vast majority (87%) trust GPs to have access to their personal health information, and
over half trust other health
professionals – such as consultants or hospital doctors (59%).”
·
The public needs “a human face to reassure them and
discuss the issues around consent and confidentiality with them. Health
professionals in general, and GPs in particular, are the most trusted to
perform this role. For many, the GP’s surgery is the most frequent point of
contact on health issues and it would seem sensible to use this as one location
for dissemination of information about personal health information for medical
research purposes.”
The Academy of Medical
Sciences presented a review of public engagement on the use of patient data,
summarising several reports thus:
·
NHS Connecting
for Health – Using patient information in the NHS (2009).98 This report found that
the 96 participants were generally happy for their data to be used in research
as long as anonymity was ensured and they were approached by someone they knew
and trusted, such as their GP.
·
Royal Academy of
Engineering –Young people’s views on the development and use of Electronic Patient
Records (201099) Of 3,000 young people surveyed, most were not against the idea
of anonymised data being used in medical research; 50% said that they would
want to be asked for consent each time researchers used their anonymous record.
·
New Economics Foundation - Exploring public views
on personal electronic health records (October 2010100) Surveyed 6000 people
and found: that 57% of adults and 67% of young people were enthusiastic about
the benefits of switching to digital patient records; and that patient consent
would be essential for using identifiable data for research.
·
Wellcome Trust/University of Surrey – Public
Attitudes to Research Governance (2006). Based on interviews and focus groups
with 89 people; the report found participants were willing to provide personal
data for biomedical research providing its use had been explained to them.
Concerns remained over whether promises of anonymity and security could be
fully relied on.
·
MRC/Ipsos MORI - The Use of Personal Health
Information in Medical Research (2007). Interviewed a sample of 2,106 UK adults
and found that 69% were ‘likely’ to allow the data to be used for health
research purposes
·
Academy of Medical Sciences - Personal data for
public good: using health information in medical research (2006). Consulted
with a wide range of patient representatives and found research using personal
data was strongly supported. Public engagement was identified as one of the
most important tasks in developing future arrangements for appropriate
governance for the use of health information in health research.
Another 2007 report, a survey of literature
covering public and professional attitudes to privacy of healthcare data
commissioned by the General Medical Council and conducted by Cambridge Health
Informatics, came to the following conclusions:
·
Assessment of public attitudes is
dependent on how the topic is framed. People will express concerns if questioned
about ‘concerns’, but will readily trade these ‘concerns’ for health or other benefits, even altruistic ones.
·
‘Real world’ choices can be very
different (and constrained) from those offered in opinion surveys where costs
and trade-offs may not appear.
·
Public attitudes are not uniform
and the surveys suggest that they are often either ill-informed or unformed (or
sometimes formed during an investigation or discussion).
·
Attitudes among the public vary
from the completely unconcerned to a small proportion of the public that has
strong views on privacy, either from a sense of a ‘right to privacy’ or because
of some sensitive episode in the past that they wish to protect. The majority
of the public seem to rely on trust in clinicians and the healthcare system.
·
It is clear that the public (and
to some degree the professions) are unclear on the potential roles of medical
records in modern healthcare.
·
The public would like a choice in
the use of their records, but there is little hard evidence about what arrangement
of choices the public would generally prefer – or whether there are radically
different opinions on this.
·
The public appear to be becoming
more comfortable with computer technology, which may reduce fears over privacy,
but with increasing expectations over security and choice about access to their
records.
Of note these authors contend that “Generally much
of healthcare policy in relation to the privacy of healthcare data has been
based on historic ethical and legal considerations together with financial
practicalities rather than on an evidence-base of what individuals would want
or expect. This has been, in part, been
due to a perceived lack of understanding by the public at large (and many
professionals too) of how medical records are actually used and shared within
the healthcare system as a whole: this perception means that they have rarely
been asked in any formal consultative way.”
They also contend, however, that “Establishing
public concerns about the privacy of health data poses problems because, from
the few surveys that have been performed, it appears that only a small
proportion of the public have a strong opinion and fewer still have an
understanding of the complex issues that need to be weighed up when arriving at
an opinion.”
Ibid.
Full citations for these reports are:
UK Clinical Research Collaboration (2010). Attitudes and
awareness amongst General Practioners (GPs) and
patients about the use of patient data in research – a
study by the UK Clinical Research Collaboration Board
Sub-Group on Public Awareness. UCKRC, London.
NHS Connecting for Health (2009). Using patient
information in the NHS.
http://www.connectingforhealth.nhs.uk/engagement/public/consultations/hsreport.pdf
Royal Academy of Engineering (2010).Privacy and prejudice:
young people’s views on the development and
use of electronic patient records.
http://www.raeng.org.uk/news/publications/list/reports/Privacy_and_Prejudice_EPR_views.pdf
New Economics Foundation (2010). Who sees what? Exploring
public views on personal electronic health
records.
http://www.neweconomics.org/sites/neweconomics.org/files/Who_Sees_What.pdf
Wellcome Trust/University of Surrey (2006) Public
attitudes to research governance: a qualitative study in a
deliberative context.
http://www.wellcome.ac.uk/stellent/groups/corporatesite/@policy_communications/documents/web_document
/wtx038443.pdf
Medical Research Council/Ipsos MORI (2007). The use of
personal health information in medical research.
http://www.mrc.ac.uk/consumption/idcplg?IdcService=GET_FILE&dID=10983&dDocName=MRC003810&allowI
nterrupt=1
Academy of Medical Sciences (2006). Personal data for
public good: using health information in medical
