Table 1

Study characteristics

No.ReferencePerspectiveStudy aimDate of data collectionSettingSample (n, gender, age, etc)Method of data collection
1O’Brien et al, 201928 PatientsTo examine patient perspective on the risks and benefits of linking existing data sources for research.Between December 2015 and February 2016.Online patient community
PatientsLikeMe (PLM).
n=3516; female (73.8%); >65 years (14.5%); Caucasian (86.4%); completed college/postgraduate education (44.9%).Questionnaire
2McCormick et al, 201924 PublicTo benchmark the views of Canadians about the use of administrative/routinely collected data for health research.Between January and August 2017.Websites, email and social media of three Canadian joint and skin disease patients’ organisations.n=151; female (77.5%); British Columbians (55.6%); university graduates (57.6%); chronic disease (66.9%).Cross-sectional online survey
3Colombo et al, 201930 Patients and publicTo gather knowledge on the opinions and attitudes of Italian patient and citizen groups on individual participant data sharing from clinical studies.Between June 2017 and November 2017.Contacts of patient and citizen groups in Italy.n=280; oncology and palliative care (32.1%); operated locally or regionally (46.2%); involved in clinical research (48.6%).Cross-sectional online survey
4Richter et al, 201916 PatientsTo examine whether abolishing consent for secondary data use would be acceptable to patientsBetween March 2018
and May 2018.
Outpatients of a northern German university hospitaln=503; female (65%); >60 years (≈18%); completed high school (≈21%.)Questionnaire
5Stockdale et al 12 PublicTo systematically review the literature on UK and Irish public views of patient data used in research.Studies published between 2006 and 2016.Studies using a UK or Irish sample.20 UK and Ireland based papers (qualitative, qualitative and mixed methods).Systematic review
6Shah et al, 201934 PatientsTo investigate research participants’ beliefs about the importance of protecting their privacy, advancing research quickly and controlling future data sharingNot specifiedSubset of participants in four European countries enrolled in the DIRECT (Diabetes Research on Patient Stratification) project.n=855; >60 years (73%); female (43%); qualifications above secondary school (60%); diabetes type 2 (70%).Survey
7Shah et al, 201836 Patients and publicTo understand participants’ future data governance preferences.Between September 2015 and March 2016.Patients diagnosed with diabetes type 2 and individuals at high risk of the disease but not receiving treatment for diabetes (participants enrolled in the DIRECT project)n=855; >60 years (73%); female (43%); vocational or professional qualifications (41%); degree level (19%); secondary education (37%).Survey
8Howe et al, 201815 Patients and publicTo systematically review international evidence of research participants’ attitudes towards the sharing of data for secondary research use.Studies published between 2002 and 2017.Studies originating from Japan, Thailand, India, Kenya, Canada, Vietnam and the USA.9 papers included for review (8/9 qualitative studies)Systematic review
9Goytia et al, 201832 PatientsTo gain insight from stakeholders into their understanding of Big Data, interest and concerns in contributing to health research.Not specifiedPatients and disease groups (rare and chronic) from free-standing community organisations and disease support groups from various neighbourhoods in New York City (USA).n=138 (from eight patient/advocate groups); female (85%); non-white (91%); experience as participants in research studies
Qualitative study based on ‘opportunistic’ listening sessions led by trained facilitators during pre-existing patient, community and clinician group meetings.
10Mählmann et al, 201725 PublicTo assess the willingness of older Swiss adults to share genetic data for research purposes and to investigate factors that might impact their willingness to share data.Between December 2013 and April 2014.Older Swiss adults attending the Seniorenuniversität Zürich, Switzerland.n=40; female (52.5%); respondents aged between 67 and 92 years.Semistructured interviews
11Mursaleen et al, 2017 17 PatientsTo establish patient attitudes to ownership and sharing of their own medical data.Between June 2016 and September 2016.People with Parkinson’s disease in the UK.n=306; female (55%); between 55 and 74 years (68%); mean number of years diagnosed 7.1Online survey
12Mazor et al, 2017)20 PatientsTo understand stakeholders’ views on data sharing in multicentre comparative effectiveness research studies.Between June 2015 and February 2016US patients from two existing groups: (1) a bariatric surgery patient advisory panel; and (2) patients who participated in the Arthritis Partnership with Comparative Effectiveness Research, a Patient-Powered Research Network within the National Patient-Centred Clinical Research Network (PCORnet).n=15 patientsQualitative study based on interviews
13Goodman et al, 201721 PatientsTo examine participant preferences regarding the use of deidentified data in large research datasets2013US cancer patients recruited from the Northwest Cancer Genetics Registry.n=228; female (63.6%); mean age 64.3 years; white (93.3%); bachelor’s degree (55.3%).Online survey
14Sanderson et al, 201731 PublicTo assess willingness to participate in a biobank using different consent and data sharing models.Between April and July 2015.Participants recruited at multiple healthcare systems participating in the Electronic Medical Records and Genomics (eMERGE) Network (USA).n=13 000; female (63%); self-identified white (51%); less than a bachelor’s degree (42%); annual household income ≤$60 000 (44%).Survey
15Patil et al, 201623 PublicTo assess the public’s preferences regarding potential privacy threats from devices or services storing health-related personal data.Between August and November 2013.Respondents from 27 EU member countries.n=20 882; female (52.3%); ≥65 years (19.1%)Survey
16Aitken et al, 201613 PublicTo systematically review the literature examining public attitudes towards the sharing or linkage of health data for research purposes.Studies conducted between 1999 and 2013.Studies primarily originating from the UK and USA.25 studies included for review (focus groups, interviews, deliberative events, dialogue workshops)Systematic review
17Spencer et al, 201622 PatientsTo explore patient perspectives on the use of anonymised healthcare data for research purposes.Not specifiedPatients recruited from a rheumatology outpatient clinic and from a patient and public involvement health research network (UK).n=40; female (58%); ages ranged from 23 to 88 years (mean 61); self-identified white British (97.5%); chronic rheumatic disease (100%).Qualitative study based on 26 interviews and three focus groups.
18McCormack et al, 201618 PatientsTo document rare disease patients’ attitudes to participation in genomics research, particularly around large-scale, international data and biosample sharing.2014Rare disease patients recruited during the EURORDIS Membership Meeting at the European Conference on Rare Diseases 2014 in
Berlin and the EURORDIS Summer School for Expert Patients 2014 in Barcelona.
n=52; female (61.5%); from 16 countries.Qualitative study based on focus group discussions
19NICE Citizens Council, 201526 PublicTo explore citizens’ views regarding the ethical and practical issues that need to be considered in the use of anonymised information derived from personal care records to evaluate treatments.2015The NICE Citizens Council is a panel of 30 members of the public that provides a public perspective on challenging social and moral issues that NICE needs to take into account when producing guidance.n=30Qualitative study based on facilitated discussions at the annual 2 day meeting of the NICE Citizens Council.
20Garrison et al, 201611 Patients and publicTo systematically review attitudes towards biobanking, broad consent and data sharingStudies conducted between 2001 and 2015.Studies conducted in the USA.48 papers including a total of 35 969 individuals; female (54.2%); self-identified white (51.3%).Systematic review
21Joly et al, 201533 PublicTo examine public views about governance structure, consent and data sharing in biobanking.Between February 2013 and July 2014.Canadian adults who self-identified as being a past or potential future donor of tissue samples or genetic data to a biobank or genetic database.n=114; female (46%); ≥50 years (32%); did not attend university (50%).Survey
22Darquy et al, 201619 PatientsTo explore patient views on the sharing of their medical data in the context of compiling a European rare disease database.2012Participants recruited from 5 European countries through the European Leukodystrophies Association and LeukoTreat partners.n=46Questionnaire
23Taylor and Taylor, 201437 PublicTo investigate public views about preferable/acceptable consent models for use of personal confidential data in health research.Not specifiedPeople with different levels and kinds of involvement in the National Health Service and/or health research.n=28Mixed methods incorporating a structured questionnaire and in-depth focus group discussions.
24Shabani et al, 201414 Patients and publicTo solicit public and research participants’ attitudes with respect to genomic data sharing.Studies published between 2008 and 2013.15 papers included for review (quantitative and qualitative).Systematic review
25Hill et al, 201327 PublicTo determine the range of public opinion about the use of existing medical data for research and to explore views about consent to a secondary review of medical records for research.Not specifiedReviewed studies conducted in the USA, UK, Ireland, Canada and New Zealand.
Older men recruited from rural and suburban primary care practices in the UK.
27 papers included for review (quantitative, qualitative, systematic reviews).
n=19; female (0%); ≥50 years (100%); mean age 61 years.
Systematic review and qualitative study (focus group).
26Haga & O'Daniel, 201129 PublicTo explore public attitudes regarding data sharing practices in genomics research.Between 2008 and Between, 2009.Focus groups convened in Durham (North Carolina), USA.n=100; female (73%); African–American (76%), median age 40–49 years.Qualitative study based on 10 focus group discussions.
27Lemke et al, 201035 Patients and publicTo assess public and biorepository participant attitudes towards research participation and sharing of genetic research data.May 200849 individuals recruited from diverse Chicago (USA) neighbourhoods, of whom 28 in 3 public focus groups and 21 in 3 NUgene biorepository participant focus groups.n=28 public respondents; female (75%); some college education or more (75%); African–American (46%)
n=21 participant respondents; female (67%); some college education or more (95%); Caucasian (76%) .
Qualitative study based on six focus group discussions.
  • NICE, National Institute for Health and Care Excellence.