Presentation describes survey results on patient and public attitudes to use of patient data for research and related purposes. Presented by Cicely Marston at the Data Management in Practice workshop, which took place at the London School of Hygiene and Tropical Medicine on Nov 14th 2013

1. Using NHS Electronic Health Records for
research: results from a survey on
patient and public attitudes
Cicely Marston
Chrysanthi Papoutsi, Julie Reed, Azeem Majeed, Derek Bell
14 November 2013, LSHTM

2. Background
• Electronic Health Record (EHR): ‘longitudinal electronic record
of an individual that contains data from multiple EMRs and
EPRs; shared and interoperable across settings’ (Singleton et
al., 2007, p. 19).
o Used for health, research and policy/planning purposes simultaneously.
• Tensions between wider health information sharing and privacy
protection.
• Wealth of research on patient views, but little large-scale work
on integrated EHRs simultaneously used for different purposes.

3. Electronic Health Records project

4. Quantitative component
• Large-scale cross-sectional questionnaire survey with a total of
5,331 participants (85.5% response rate).
• Stratified cluster random sample of patients and members of the
public in an area of West London, UK.
• Recruitment in 8 outpatient waiting areas of a teaching hospital
and the waiting rooms of 8 general practice (GP) surgeries within
the hospital catchment area over a 6-week period from 1 August
2011.
• 2,554 respondents (48%) included in the full analysis sample for
research-related variables.

5. Characteristics
Age category
18-24
25-34
35-44
45-54
55-64
65-74
75+
Gender
Female
Male
Ethnicity
White British
White Non-British
Black/African/Caribbean/British Black
Asian/Asian British
Other ethnic group
Educational qualifications
No academic qualification
GCSE
A-Levels
Vocational qualification
Degree
Higher Degree
N (%)
203 (7.9)
703 (27.5)
542 (21.2)
400 (15.7)
296 (11.6)
250 (9.8)
160 (6.3)
1,521 (59.6)
1,033 (40.4)
1,447 (56.7)
524 (20.5)
182 (7.1)
188 (7.4)
213 (8.3)
111 (4.3)
278 (10.9)
255 (10.0)
304 (11.9)
959 (37.5)
647 (25.3)
Characteristics
Long term conditions
None
At least one condition
Frequency of healthcare use in past 6 months
0 to 2
3 to 5
6 to 9
10 plus
Number of different healthcare services visited
0-1
2
3+
Satisfaction with the NHS
Very satisfied
Satisfied
Neither satisfied or dissatisfied
Dissatisfied or very dissatisfied
Previous participation in health research
No
Yes
Recruitment site
GP
Outpatient
Total
N (%)
916 (35.9)
1,638 (64.1)
914 (35.8)
895 (35.0)
419 (16.4)
326 (12.8)
844 (33.0)
868 (34.0)
842 (33.0)
714 (28.0)
1,390 (54.4)
304 (11.9)
146 (5.7)
2,090 (81.8)
464 (18.2)
859 (33.6)
1,695 (66.4)
2,554 (100)

6. Overall support and concerns
Security concerns
Overall support for integrated EHRs
100%
100%
78.8%
63.6%
27.1%
21.2%
9.3%
0%
0%
In favour
Undecided
Against
Yes
No

7. Patient views
EHRs for research
EHRs for healthcare
100%
100%
100%
90%
90%
90%
80%
80%
EHRs for planning and
policy
80%
70%
67.3%
68.5%
70%
70%
60%
60%
50%
50%
50%
40%
40%
40%
30%
30%
61.0%
60%
30%
23.1%
20%
9.6%
10%
20%
13.4%
18.2%
Complete
record
Partial record
Neither
20.0%
19.0%
10%
10%
0%
20%
0%
0%
With identifiersWithout identifiers
Neither
With identifiers
Without
identifiers
Neither
Also see: Luchenski, S.A., Reed, J.E., Marston, C., Papoutsi, C., Majeed, A., Bell, D. (2013). Patient and
Public Views on Electronic Health Records and Their Uses in the United Kingdom: Cross-Sectional
Survey. J Med Internet Res, 15(8):e160. URL: http://www.jmir.org/2013/8/e160/

8. Access preferences
NHS researchers
12.8%
Academic researchers
67.7%
9.8%
19.5%
65.9%
24.3%
With identifiers
Without identifiers
Health charities
Drug companies
8.1%
59.0%
6.3%
0%
49.6%
10%
20%
30%
Not at all
32.9%
44.1%
40%
50%
60%
70%
80%
90%
100%

9. Multivariable analysis: EHRs for research
More likely to support use of
identifiable information, than
without identifiers:
• Older age groups (65+)
• Males
• Ethnic background other than
White British
• Education levels lower than
higher degree
• Frequent health service users
Identifiable EHRs for research
(base: without identifiers)
Adjusted RR
95% CI
P-value
Age (base: 25-34)
65-74
2.54
[1.84,3.52]
0.00
75+
2.44
[1.48,4.02]
0.00
1.35
[1.04,1.75]
0.03
Sex (base: female)
Male
Ethnicity (base: White British)
White non-British
1.55
[1.05,2.29]
0.03
Black British
2.09
[1.37,3.18]
0.00
Asian British
1.68
[1.13,2.51]
0.01
Education (base: higher degree)
None
4.61
[3.05,6.99]
0.00
GCSE
2.09
[1.60,2.72]
0.00
A-level
1.86
[1.39,2.47]
0.00
Vocational
2.57
[1.59,4.15]
0.00
Degree
1.33
[0.99,1.79]
0.06
Frequency of healthcare visits in the past 6m (base: 0-2 visits)
6-9 visits
1.32
[1.00,1.74]
0.05
10+ visits
1.78
[1.19,2.65]
0.01

10. Multivariable analysis: EHRs for research
More likely to report being against any sharing
of their records for research purposes, rather
than sharing without identifiers:
• Lower education levels
• Very frequent healthcare users
• Those visiting less types of health services
• Those less satisfied with the NHS
• Those recruited in outpatient clinics
No access to EHRs for research
(base: without identifiers)
Adjusted RR
95% CI
P-value
Education (base: higher degree)
None
2.27
[1.05,4.87]
0.04
GCSE
2.27
[1.60,3.20]
0.00
A-level
1.44
[1.03,2.01]
0.03
[1.06,1.69]
0.01
Recruitment site (base: GP clinic)
Outpatient clinic
1.34
Frequency of healthcare visits in the past 6m (base: 0-2 visits)
10+ visits
1.97
[1.24,3.11]
0.00
Types of healthcare services visited in the past 6 m (base: 2 services)
Less likely to report being against any sharing
of their records for research purposes, rather
than sharing without identifiers:
• Those with previous participation in health
research
0-1 services
1.30
[1.03,1.65]
Satisfaction with the NHS (base: very satisfied)
Neither satisfied or
1.41
[1.14,1.74]
dissatisfied
Dissatisfied or very
1.87
[1.23,2.85]
dissatisfied
Previous participation in research (base: No)
Yes
0.74
[0.56,0.98]
0.03
0.00
0.00
0.04

11. Multivariable analysis: research user groups
Similar patterns for access by different user groups:
- Individuals who were more likely to say they would allow access to
their identifiable, compared with anonymised data.
-
Older age
Men
Non-white-British
Lower education levels
- People with no academic qualifications compared with higher
degrees more likely to agree with access to their identifiable
information (RR=3.89 for NHS researchers, RR=4.67 for academic
researchers, RR=11.63 for health charities, RR=10.19 for drug
companies, p=0.00 in all cases).

12. Multivariable analysis: research user groups
- Non-White-British respondents were much more likely to say they
would not allow any access at all than to share their
anonymised data for research.

13. Consent preferences
• Before use of identifiable records: Around 91% would prefer
to be asked for permission against 9% who would not like to
be asked.
• Before use of records without identifiers: Around 54% would
prefer to be asked for permission against 46% who would not
like to be asked.

14. Conclusions
• There is support for integrated EHRs, with accompanying
security concerns.
• Preferences for research access to EHRs are nuanced.
• There are clear differences in preferences by ethnic group
and by education level, which need to be understood
further.
• Any database needs to be developed and used sensitively,
taking into account all concerns, not simply those of the
majority group.

15. Acknowledgments
• All participants
• GP practices and outpatient clinics, patient
organisations, health professionals, and
everyone else who contributed to
recruitment.
• Fiona Riordan
• Serena Luchenski
• Kaori Sasaki
• Anjali Balasanthiran
• Rachael Aldersley
• Cameron Bell
• Sylvia Chalkley
• Jason Curran
• Shaun D’Souza
•
•
•
•
•
•
•
•
Stuart Green
Sarah Hancox
Sina Iqbal
Uzoma Nnajiuba
Harsita Patel
Joshua Wolrich
Jade Zhao
This research was funded by the Wellcome
Trust.
• Julie Reed and Derek Bell are supported by
NIHR CLAHRC for Northwest London, and
Julie Reed is also supported by the Health
Foundation.