Acceptability and perceived barriers and facilitators to creating a national research register to enable 'direct to patient' enrolment into research: The Scottish Health Research Register (SHARE)

BMC Health Services Research

Volumn 13, Issue 1, 2013, Pages

  Grant, Aileen ^a   Ure, Jenny ^b   Nicolson, Donald J ^c   Hanley, Janet ^d   Sheikh, Aziz ^e,f   McKinstry, Brian ^e   Sullivan, Frank ^a  

^a UNIVERSITY OF DUNDEE   (United Kingdom)

^b UNIVERSITY OF EDINBURGH   (United Kingdom)

^c UNIVERSITY OF HULL   (United Kingdom)

^d NHS LOTHIAN   (United Kingdom)

^e UNIVERSITY OF EDINBURGH   (United Kingdom)

^f BRIGHAM AND WOMEN S HOSPITAL   (United States)

Author keywords

Qualitative; Randomised controlled trial; Recruitment; Research register

Indexed keywords

ARTICLE; ELECTRONIC MEDICAL RECORD; FEMALE; HUMAN; INFORMATION PROCESSING; INTERVIEW; MALE; METHODOLOGY; ORGANIZATION AND MANAGEMENT; PATIENT SELECTION; QUALITATIVE RESEARCH; REGISTER; UNITED KINGDOM; VOLUNTEER;

DATA COLLECTION; ELECTRONIC HEALTH RECORDS; FEMALE; FOCUS GROUPS; HUMANS; INTERVIEWS AS TOPIC; MALE; PATIENT SELECTION; QUALITATIVE RESEARCH; REGISTRIES; SCOTLAND; VOLUNTEERS;

EID: 84885509295     PISSN: None     EISSN: 14726963     Source Type: Journal    
DOI: 10.1186/1472-6963-13-422     Document Type: Article

References (41)

1. What influences recruitment to randomised controlled trials? A review of trials funded by two UK funding agencies. McDonald A, Knight R, Campbell M, Entwistle V, Grant A, Cook J, Elbourne D, Francis D, Garcia J, Roberts I, et al. Trials 2006 7 1 9 10.1186/1745-6215-7-9 16603070 (Pubitemid 43862982)
2. U.K. to Open Health Records as E.U. Considers Restrictions. Vogel E, Science 2011 334 1483 1484 10.1126/science.334.6062.1483 22174222
3. Strategies for recruitment and retention of participants in clinical trials. Probstfield RL, Frye RL, J Am Med Assoc 2011 306 1798 1799 10.1001/jama.2011.1544
4. A new pathway for the regulation and governance of health research http://www.acmedsci.ac.uk/p47prid88.html Accessed 8th November 2012
5. Strategies to improve recruitment to randomised controlled trials. Treweek S, Mitchell E, Pitkethly M, Cook J, Kjeldstrom M, Johansen M, Taskila TK, Sullivan F, Wilson S, Jackson C, et al. Cochrane Database Syst Rev 2010 4 rt. No.: MR000013
6. National survey of British public's views on use of identifiable medical data by the National Cancer Registry. Barrett G, Cassell JA, Peacock JL, Coleman MP, Br Med J 2006 332 7549 1068 1072 10.1136/bmj.38805.473738.7C (Pubitemid 44365487)
7. The diabetes audit and research in Tayside Scotland (darts) study: electronic record linkage to create a diabetes register. Morris AD, Boyle DI, MacAlpine R, Emslie-Smith A, Jung RT, Newton RW, MacDonald TM, Br Med J 1997 315 7107 524 528 10.1136/bmj.315.7107.524 (Pubitemid 27359106)
8. Computational challenges and human factors influencing the design and use of clinical research participant eligibility pre-screening tools. Pressler T, Yen P-Y, Ding J, Liu J, Embi P, Payne PR, BMC Med Inform Decis Mak 2012 12 1 47 10.1186/1472-6947-12-47 22646313
9. Clinical research subject recruitment: the Volunteer for Vanderbilt Research Program. Harris PA, Lane L, Biaggioni I, J Am Med Assoc 2005 12 608 613 10.1197/jamia.M1722 (Pubitemid 41597806)
10. ResearchMatch: a national registry to recruit volunteers for clinical research. Harris PA, Scott KW, Lebo L, Hassan N, Lightner C, Pullney J, Acad Med 2012 87 1 66 73 10.1097/ACM.0b013e31823ab7d2 22104055
11. Mediguard.org http://www.mediguard.org Accessed 8th November 2012
12. £20 million for new health informatics research institute http://www.mrc.ac.uk/Newspublications/News/MRC009207
13. Scottish Diabetes Research Portfolio November 2010-October 2011 http://www.sdrn.org.uk/sites/default/files/sdrpreport-2011.pdf Accessed 12th November 2012
14. Implementation and adoption of nationwide electronic health records in secondary care in England: qualitative analysis of interim results from a prospective national evaluation. Robertson A, Cresswell K, Takian A, Petrakaki D, Crowe S, Cornford T, Barber N, Avery A, Fernando B, Jacklin A, et al. Br Med J 2010 341.4564
15. Implementation and adoption of nationwide electronic health records in secondary care in England: final qualitative results from prospective national evaluation in "early adopter" hospitals. Sheikh A, Cornford T, Barber N, Avery A, Takian A, Lichtner V, Petrakaki D, Crowe S, Marsden K, Robertson A, et al. Br Med J 2011 343 6054 10.1136/bmj.d6054
16. The privacy of our medical records is being sold off http://www. theguardian.com/commentisfree/2012/aug/28/code-practice-medical-data-vulnerable? CMP=twt-gu
17. Improving recruitment to clinical trials with a register of a million patients who agree to the use of their clinical records for the research in the Scottish Health Research Register (SHARE). Sullivan F, Treweek S, Grant A, Daly F, Nicolson D, McKinstry B, Hanley J, Ure J, Sheikh A, Trials 2011 12 Suppl. 1 115
18. ScottisH Informatics Programme http://www.scot-ship.ac.uk/ Accessed 13th November 2012
19. Scottish Primary Care Research Network http://www.sspc.ac.uk/ spcrnaboutus-item Accessed 12th November 2012
20. Barbour R, Introducing Qualitative Research London: Sage Publications Ltd 2008
21. Silverman D, Interpreting Qualitaitve Data London: Sage Publications Ltd 3 2006
22. UK Biobank: a project in search of a protocol. Barbour V, The Lancet 2003 361 1734 1738 10.1016/S0140-6736(03)13377-6 (Pubitemid 36577451)
23. Laurie G, Sethi N, Information Governance of Use of Health-Related Data in Medical Research in Scotland: Towards a Good Governance Framework Edinburgh: University of Edinburgh 2013 http://www.scot-ship.ac.uk/sites/default/files/ Reports/Working-Paper-2.pdf
24. Trust in the context of patient safety problems. Entwistle V, Quick O, Journal of Health Organization & Management 2006 20 5 397 416 10.1108/14777260610701786 17087402 (Pubitemid 44440086)
25. Conceptualising trust and health. Brownlie J, Researching Trust and Health London: Routledge, Brownlie J, Greene A, Howson A, 2008
26. When personal data, behavior and virtual identities become and commodity: would a property rights approach matter? Prins C, SCRIPTed 2006 270 3 4
27. Tackling community concerns about commercialisation and genetic research: a modest interdisciplinary proposal. Haddow G, Laurie G, Cunningham-Burley S, Hunter K, Soc Sci Med 2007 64 272 282 10.1016/j.socscimed.2006.08.028 17050056 (Pubitemid 44894658)
28. Medical Research Council, New Centres put Health Records at Heart of UK Medical Research, Volume 7th 2012 http://www.mrc.ac.uk/Newspublications/News/ MRC008799
29. Concerns over confidentiality may deter adolescents from consulting their doctors. A qualitative exploration. Carlisle J, Shickle G, Cork M, et al. J Med Ethics 2006 32 133 137 10.1136/jme.2004.011262 16507655 (Pubitemid 43338115)
30. Holding personal information in a disease-specific register: the perspectives of people with multiple sclerosis and professionals on consent and access. Baird W, Jackson R, Ford H, Evangelou N, Busby M, Bull P, Zajicek J, J Med Ethics 2009 35 92 96 10.1136/jme.2008.025304 19181880
31. Registry research and medical privacy. Ingelfinger JR, Drazen JM, N Engl J Med 2004 350 14 1452 1453 10.1056/NEJMe048027 15070797 (Pubitemid 38420001)
32. Data protection, informed consent, and research. Peto J, Fletcher O, Gilham C, Br Med J 2004 328 7447 1029 1030 10.1136/bmj.328.7447.1029 (Pubitemid 38580823)
33. Recruitment of representative samples for low incidence cancer populations: do registries deliver? Clinton-McHarg T, Carey M, Sanson-Fisher R, Tracey E, BMC Med Res Methodol 2011 11 1 5 21235819
34. Alternatives to project-specific consent for access to personal information for health research: what is the opinion of the Canadian public. Willison DJ, Schwartz L, Abelson J, Charles C, Swinton M, Northrup D, Thabane L, J Am Med Assoc 2007 14 706 712 10.1197/jamia.M2457 (Pubitemid 350027793)
35. Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study. Robling MR, Hood K, Houston H, Pill R, Fay J, Evans HM, J Med Ethics 2004 30 1 104 109 10.1136/jme.2003.005157 14872086 (Pubitemid 38262819)
36. Summary of responses to the consultation on the additional uses of patient data http://collections.europarchive.org/tna/20100509080731/http://www. dh.gov.uk/prod-consum-dh/groups/dh-digitalassets/documents/digitalasset/ dh-110715.pdf Accessed 8th November 2012
37. Governance of research that uses identifiable personal data. Souhami R, Br Med J 2006 333 7563 315 316 10.1136/bmj.333.7563.315 (Pubitemid 44350393)
38. Scotland to host clinical trials register
39. Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study. Robling MR, Hood K, Houston H, Pill R, Fay J, Evans NM, J Med Ethics 2004 30 104 109 10.1136/jme.2003.005157 14872086 (Pubitemid 38262819)
40. Summary of responses to the consultation of the additional uses of patient data Accessed 12th November 2012
41. Medical profiling and online medicine: the ethics of 'personalised healthcare' in the consumer age http://www.nuffieldbioethics.org/personalised- healthcare-0 Accessed 8th November 2012