This Article Full Text (PDF) References Alert me when this article is cited Alert me if a correction is posted Citation Map Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Add to Saved Citations Download to citation manager Request Permissions Request Reprints Add to My Marked Citations Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Ewing, G. Articles by Todd, C. Search for Related Content PubMed PubMed Citation Articles by Ewing, G. Articles by Todd, C. Social Bookmarking                   What's this?

Recruiting patients into a primary care based study of palliative care: why is it so difficult?

Centre for Family Research, University of Cambridge, Cambridge

Margaret Rogers

East Anglia's Children's Hospices, Milton, Cambridge

Stephen Barclay

Department of Public Health and Primary Care, Institute of Public Health, Cambridge

Janet McCabe

Arthur Rank House, Brookfields Hospital, Cambridge

Anna Martin

General Practice and Primary Care Research Unit, Institute of Public Health, Cambridge

Chris Todd

School of Nursing, Midwifery and Health Visiting, University of Manchester, Manchester

In the UK, researchers' access to study populations and control over selection of participants is becoming increasingly constrained by data protection and research governance legislation. Intervening stages placed between researchers and the population they wish to study can have serious effects on recruitment and ultimately on the validity of studies. In this paper we describe our experiences of gaining access to patients for a study of palliative care in primary care. Despite considerable time and resources dedicated to recruitment, a smaller than anticipated study sample was achieved. We found that gatekeeping by ethics committees and practitioner control over sample selection were significant hurdles in accessing patients for the study. Gatekeeping responsibilities represent considerable challenges for researchers seeking to obtain a representative study sample, not just in palliative care, but for research in general in health care.

Key Words: ethics committees • gatekeeping • palliative care • primary care • recruitment

CiteULike    Connotea    Del.icio.us    Digg    Reddit    Technorati    What's this?

This article has been cited by other articles:

				P W Keeley Improving the evidence base in palliative medicine: a moral imperative J. Med. Ethics, October 1, 2008; 34(10): 757 - 760. [Abstract] [Full Text] [PDF]

				J. Penrod, R. S. Morrison, and D. E. Meier Studying the Effectiveness of Palliative Care JAMA, September 3, 2008; 300(9): 1022 - 1023. [Full Text] [PDF]

				M. Eriksson and B. Andershed Care Dependence: A Struggle Toward Moments of Respite Clin Nurs Res, August 1, 2008; 17(3): 220 - 236. [Abstract] [PDF]

				S Murray, S Barclay, M. Bennett, M Kendall, Z Amir, and M Lloyd-Williams Editorial: Palliative care research in the community: it is time to progress this emerging field Palliative Medicine, July 1, 2008; 22(5): 609 - 611. [PDF]

				K. Flemming, J. Adamson, and K. Atkin Improving the effectiveness of interventions in palliative care: the potential role of qualitative research in enhancing evidence from randomized controlled trials Palliative Medicine, March 1, 2008; 22(2): 123 - 131. [Abstract] [PDF]

				K. T. Kirchhoff and K. A. Kehl Recruiting Participants in End-of-Life Research American Journal of Hospice and Palliative Medicine, January 1, 2008; 24(6): 515 - 521. [Abstract] [PDF]

				V. Mason, A Shaw, N. Wiles, J Mulligan, T. Peters, D Sharp, and G Lewis GPs' experiences of primary care mental health research: a qualitative study of the barriers to recruitment Fam. Pract., October 1, 2007; 24(5): 518 - 525. [Abstract] [Full Text] [PDF]

				D. Tomlinson, U. Bartels, E. Hendershot, J. Constantin, G. Wrathall, and L. Sung Challenges to participation in paediatric palliative care research: a review of the literature Palliative Medicine, July 1, 2007; 21(5): 435 - 440. [Abstract] [PDF]

				K. E Steinhauser, E. C Clipp, J. C Hays, M. Olsen, R. Arnold, N. A Christakis, J. H. Lindquist, and J. A Tulsky Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research Palliative Medicine, December 1, 2006; 20(8): 745 - 754. [Abstract] [PDF]

				C. Zimmermann and R. Wennberg Integrating Palliative Care: A Postmodern Perspective American Journal of Hospice and Palliative Medicine, August 1, 2006; 23(4): 255 - 258. [Abstract] [PDF]

				S. Barnes, M. Gott, S. Payne, C. Parker, D. Seamark, S. Gariballa, and N. Small Recruiting older people into a large, community-based study of heart failure Chronic Illness, December 1, 2005; 1(4): 321 - 329. [Abstract] [PDF]

				J. B Hopkinson, D. N. Wright, and J. L Corner Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life Palliative Medicine, October 1, 2005; 19(7): 532 - 537. [Abstract] [PDF]

				C. E Walshe, A. L Caress, C. Chew-Graham, and C. J Todd Case studies: A research strategy appropriate for palliative care? Palliative Medicine, December 1, 2004; 18(8): 677 - 684. [Abstract] [PDF]