Table 1. Included study characteristics.
| Study
no. |
Reference | Method | Setting | Data Collection
Period |
Sample | Quality
Score |
|---|---|---|---|---|---|---|
| 27 | Audrey, S.,
et al., BMC Medical
Research Methodology, 2016. 16: p. 34 |
Qualitative: focus groups
with participants from ALSPAC. |
Bristol, England | Not stated | Total n=55, 56.4% female 43.6% male Ages: 17–19. | 5 |
| 28 | Baird, W.,
et al., Journal of Medical
Ethics, 2009. 35(2): p. 92–96. |
Qualitative: focus groups
and interviews. |
England and
Northern Ireland |
February and July
2006 |
Total n=68 Focus groups: Patients with MS and
stakeholders (n=55) Interviews: Health and social care professionals an academics (n=13) |
5 |
| 29 | Barrett, G.,
et al., British Medical
Journal, 2006. 332(7549): p. 1068–1070. |
Quantitative: survey run
by the Office of national statistics |
England, Wales
and Scotland |
March and April
2005 |
Total n=2872 46% male 54% female Ages: 16–44
46%; 45–64 35%; 65+ 20% |
6 |
| 30 | Buckley, B.S., A.W. Murphy, and A.E.
MacFarlane, Journal of Medical Ethics, 2011. 37(1): p. 50–55. |
Quantitative: postal
electoral roll-based questionnaire survey. |
Republic of
Ireland |
Not stated | Total n=1575 27.6% male 71.6% female Ages:
18–75+ |
4 |
| 31 | Campbell, B.,
et al., Quality and Safety
in Health Care, 2007. 16(6): p. 404–408. |
Quantitative: postal
questionnaire |
South-West
England |
October to
December 2004 |
Total n=166 patients recently discharged from
the care of 78 bed-holding consultants across all specialties at the Royal Devon and Exeter Hospital. |
5 |
| 32 | CM Insight and Wellcome Trust,
Summary report of qualitative research into public attitudes to personal data and linking personal data. 2013. |
Qualitative: focus groups
and one-to-one telephone interviews. |
London,
Midlands and Norfolk, England |
29 April to 12 May
2013 |
Total n=50, Ages: 18–70 Focus group
respondents were recruited as owners of store loyalty cards, smart phones and social media users. Telephone interviewees were recruited as especially pro-privacy or cautious about sharing personal data. |
3 |
| 4 | Clerkin, P.,
et al., Family Practice, 2013.
30(1): p. 105–112. |
Qualitative: focus groups. | West Republic of
Ireland |
Not stated | Total n=35, female (n=18) male (n=17) Ages:
18–35(n=2); 36–55(n=14); 56–70 (n=19). |
6 |
| 33 | Grant, A.,
et al., BMC Health Services
Research, 2013. 13: p. 422. |
Qualitative: focus groups
and semi-structured interviews. |
Tayside and
Lothian, Scotland |
Between February
and June 2011 |
Total n=64, Focus Groups: Patients (n=37), Health
services researchers (n=10) Interviews: GPs and Practice managers (n=17) |
5 |
| 34 | Haddow, G.,
et al., Journal of
Evaluation in Clinical Practice, 2011. 17(6): p. 1140–1146. |
Qualitative: focus groups. | North East
Scotland |
May and June 2009 | Total n=19, female (n=12), male (n=6), Unstated
(n=1) Ages: <60 (n=1); 60–74 (n=15); +75 (n=3). |
5 |
| 35 | Hays, R. and G. Daker-White, BMC
Public Health, 2015. 15: p. 838. |
Qualitative: using tweets. | Over 18 days
during February and March 2014 |
3537 tweets containing the hashtag #caredata;
904 contributors |
6 | |
| 36 | Hill, E.M.,
et al., BMC Medical Research
Methodology, 2013. 13: p. 72. |
Qualitative: focus groups. | England, Wales,
Scotland and Northern Ireland |
Not stated | Total n=19, 100% male Ages: 54–69; mean age 61. | 4 |
| 37 | Ipsos Mori, Medical Research Council,
The use of personal health information in medical research general public consultation. 2007. |
Mixed methods study.
Qualitative: workshops and interviews Quantitative: face-to-face survey |
England, Wales,
Scotland and Northern Ireland |
Quant: 14–18 Sept
2006; Qual 29/7- 5/8 2006 |
Quant: 2106 people aged 15+; Qual: Total n=69
Workshops: General public (n=63) Interviews: disabled people, and people with chronic illnesses/or their carers (n=6) |
3 |
| 38 | Ipsos Mori, Macmillan Cancer Support,
Cancer Research UK, Perceptions of the Cancer Registry: Attitudes towards and awareness of cancer data collection. 2016. |
Quantitative: online
survey. |
England | 13 June to 4 July
2016 |
Total n=2,033 Adults who have, or have had
cancer (PLWC) (n=1,033) Adults from the general public (n=1,000). All 18+ |
5 |
| 39 | Ipsos Mori, Wellcome Trust, The
one-way mirror: Public attitudes to commercial access to health data. 2016. |
Mixed methods study.
Quantitative: face-to-face survey Qualitative workshops |
England, Wales,
Scotland and Northern Ireland |
September to
December 2015 |
Quant: n = 2017, age 16+; Qual n= 247;
Members of the general public, patients, and ALSPAC cohort members (n=212) GPs and hospital doctors (n=35) |
3 |
| 40 | Ipsos Mori, Wellcome Trust, Wellcome
Trust monitor report wave 3: Tracking public views on science and biomedical research. 2016. |
Quantitative:
questionnaire using face-to-face Computer-Assisted Personal Interviewing (CAPI). |
England, Wales,
Scotland and Northern Ireland |
2 June to 1
November 2015 |
Total n=1,524 Ages: 18+ | 5 |
| 41 | Luchenski, S.A.,
et al., Journal of
Medical Internet Research, 2013. 15(8). |
Quantitative: cross
sectional, self-completed questionnaire survey. |
West London,
England |
Six weeks from 1
August 2011 |
Total n=2857, 59.5% female, 40.5% male Ages:
18–75+ |
5 |
| 42 | Papoutsi, C.,
et al. BMC Medical
Informatics and Decision Making, 2015. 15(1): p. 124. |
Mixed methods study.
Quantitative: questionnaire survey Qualitative: focus groups and interviews. |
West London,
England |
Between August
2011 and April 2013 |
Quant: n=2761, 59.1% female; Qual: n=160,
Patients (n=114). Health professionals and researcher total not stated Interviews: Patients who did not wish to join group discussions (n=6). |
4 |
| 43 | Riordan, F.,
et al., International Journal
of Medical Informatics, 2015. 84(4): p. 237–247. |
Quantitative:
Crosssectional, self-completed questionnaire survey. |
West London,
England |
Six weeks from 1
August 2011 |
Total n=3157, 60.4% female, 39.6% male | 5 |
| 44 | Spencer, K.,
et al., Journal of Medical
Internet Research, 2016. 18(4): p. e66. |
Qualitative: focus groups
and interviews. |
Salford, England | Not stated | Total n=40, 58% female, 43% male, Ages: 23–88 | 4 |
| 45 | Stevenson, F.,
et al., Family Practice,
2013. 30(2): p. 227–232. |
Qualitative: focus groups
and interviews |
Not stated | Not stated | Total n=57, Patients (n=50), Staff members (n=7). | 4 |