12th July 2019, Volume 132 Number 1498

Yeojeong Jane So, Michael Jameson, Vincent Newton, Anne O’Donnell, Mark Jeffery, Christopher Jackson, Alexander Tuck, Kate Gregory, Richard North, Malcolm Anderson, Katrina Sharples, Michael Findlay, Michelle K Wilson

One in two New Zealanders will have contact with cancer, either personally or through a relative or friend.1 Cancer remains the leading cause of mortality in New Zealand and is…

Subscriber content

The full contents of this page is only available to subscribers.

To view this content please login or subscribe


Clinical trials often provide access to unfunded or investigational treatments and trial participation has improved cancer outcome around the world. To better understand why New Zealand has low clinical trials participation rates, we conducted a qualitative survey of cancer patients around New Zealand to determine what barriers are present at patient level. Our patients reported strong enthusiasm in clinical trials across age, tumour group, demographics and location. Majority wanted to participate in clinical trials/research to help others but few patients felt that fear of randomisation held them back from participating in clinical trials.



Fewer than 5% of adult cancer patients participate in clinical trials, with multiple patient, clinician and institutional barriers identified. This study aimed to explore patient factors that impact access to cancer trials in New Zealand.


A questionnaire that included demographics and factors that might impact trial participation was circulated via nine district health boards (DHBs) and four cancer foundations to patients with a cancer diagnosis.


Between July 2016 and August 2017, 691 patients responded, 62% female and 77% aged >50 years. Most patients (86%) would consider trial participation, which differed by income (p=0.0001) but not by age, tumour type or gender. Patients would consider attending another hospital (44%) or relocating (11%); 10% considered trials a last resort. Advantageous factors to participation included: benefiting others (92%), better treatment (82%), more scans and longer follow-up (47% and 51%). Disincentives included fear of randomisation (78%), treatment toxicities (71%), time and cost of more visits (40%) and unspecified future research (32%).


Identified barriers to trial participation were similar in New Zealand to other developed countries. In this motivated cohort, patients are very interested in trial participation at any stage of their treatment and did not mind extra travel or tests.

Author Information

Yeojeong Jane So, Medical Oncology, Auckland District Health Board (DHB), Auckland;
Michael Jameson, Waikato DHB, Waikato Clinical Campus, University of Auckland, Auckland;
Vincent Newton, Northland DHB, Whangarei; Anne O’Donnell, Capital and Coast DHB, Wellington; 
Mark Jeffery, Canterbury DHB, Canterbury; Christopher Jackson, Southern DHB; Dunedin School of Medicine, University of Otago, Dunedin; Alexander Tuck, Medical Oncology, Auckland District Health Board (DHB), Auckland; Kate Gregory, Nelson and Marlborough DHB, Nelson; 
Richard North, Bay of Plenty DHB, Bay of Plenty; Malcolm Anderson, Mid Central DHB;
Katrina Sharples, Medical Oncology, Auckland District Health Board (DHB), Auckland; Cancer Trials New Zealand, University of Auckland, Auckland; Michael Findlay, Medical Oncology, Auckland District Health Board (DHB), Auckland; Cancer Trials New Zealand, University of Auckland, Auckland; 
Michelle K Wilson, Medical Oncology, Auckland District Health Board (DHB), Auckland; Cancer Trials New Zealand, University of Auckland, Auckland. 


Dr Yeojeong Jane So, Medical Oncology, Auckland District Health Board (DHB), Auckland.

Correspondence Email


Competing Interests



  1. http://www.health.govt.nz/our-work/diseases-and-conditions/cancer-programme
  2. Jackson C, Robinson B, Findlay M. Cancer services to 2025 in New Zealand--investing in research-driven quality care. N Z Med J 2014; 127:5–9. 
  3. Wilson MK, Collyar D, Chingos DT, et al. Outcomes and endpoints in cancer trials: bridging the divide. Lancet Oncol 2015; 16:e43–52. 
  4. Gelijns AC, Gabriel SE. Looking beyond translation--integrating clinical research with medical practice. N Engl J Med 2012; 366:1659–61. 
  5. O’Leary M, Krailo M, Anderson JR, et al. Progress in childhood cancer: 50 years of research collaboration, a report from the Children’s Oncology Group. Semin Oncol 2008; 35:484–93. 
  6. Tournoux C, Katsahian S, Chevret S, et al. Factors influencing inclusion of patients with malignancies in clinical trials. Cancer 2006; 106:258–70. 
  7. Grunfeld E, Zitzelsberger L, Coristine M, et al. Barriers and facilitators to enrollment in cancer clinical trials: qualitative study of the perspectives of clinical research associates. Cancer 2002; 95:1577–83. 
  8. Ross S, Grant A, Counsell C, et al. Barriers to participation in randomised controlled trials: a systematic review. J Clin Epidemiol 1999; 52:1143–56. 
  9. Townsley CA, Selby R, Siu LL. Systematic review of barriers to the recruitment of older patients with cancer onto clinical trials. J Clin Oncol 2005; 23:3112–24. 
  10. Lara PN Jr, Higdon R, Lim N, et al. Prospective evaluation of cancer clinical trial accrual patterns: identifying potential barriers to enrollment. J Clin Oncol 2001; 19:1728–33. 
  11. Javid SH, Unger JM, Gralow JR, et al. A prospective analysis of the influence of older age on physician and patient decision-making when considering enrollment in breast cancer clinical trials (SWOG S0316). Oncologist 2012; 17:1180–90. 
  12. Klabunde CN, Springer BC, Butler B, et al. Factors influencing enrollment in clinical trials for cancer treatment. South Med J 1999; 92:1189–93. 
  13. Begg CB, Carbone PP. Clinical trials and drug toxicity in the elderly. The experience of the Eastern Cooperative Oncology Group. Cancer 1983; 52:1986–92. 
  14. Hunter CP, Frelick RW, Feldman AR, et al. Selection factors in clinical trials: results from the Community Clinical Oncology Program Physician’s Patient Log. Cancer Treat Rep 1987; 71:559–65. 
  15. Jenkins V, Farewell V, Farewell D, et al. Drivers and barriers to patient participation in RCTs. Br J Cancer 2013; 108:1402–7. 
  16. http://www.stats.govt.nz/assets/Uploads/User-guides/user-guide-for-stats-nz-wage-and-income-measures-4th-ed.pdf 2018.
  17. http://www.ncri.org.uk/wp-content/uploads/2013/09/NCRI-Press-Release-2010-7Nov.pdf 2018.
  18. http://www.anzctr.org.au/docs/Monthly%20Website%20Reporting_Statistics.pdf?t=368 2018.
  19. Unger JM, Cook E, Tai E, et al. The Role of Clinical Trial Participation in Cancer Research: Barriers, Evidence, and Strategies. Am Soc Clin Oncol Educ Book 2016; 35:185–98.
  20. Moorcraft SY, Marriott C, Peckitt C, et al. Patients’ willingness to participate in clinical trials and their views on aspects of cancer research: results of a prospective patient survey. Trials 2016; 17:17. 
  21. Unger JM, Hershman DL, Albain KS, et al. Patient income level and cancer clinical trial participation. J Clin Oncol 2013; 31:536–42. 
  22. Murthy VH, Krumholz HM, Gross CP. Participation in cancer clinical trials: race-, sex-, and age-based disparities. JAMA 2004; 291:2720–6. 
  23. Corbie-Smith G, Thomas SB, St George DM. Distrust, race, and research. Arch Intern Med 2002; 162:2458–63. 
  24. Michaels M, Blakeney N, Langford AT, et al. Five Principles for Effective Cancer Clinical Trial Education Within the Community Setting. J Cancer Educ, 2014.
  25. Byrne MM, Tannenbaum SL, Gluck S, et al. Participation in cancer clinical trials: why are patients not participating? Med Decis Making 2014; 34:116–26.
  26. Ellis PM, Butow PN, Simes RJ, et al. Barriers to participation in randomized clinical trials for early breast cancer among Australian cancer specialists. Aust N Z J Surg 1999; 69:486–91. 
  27. Hamel LM, Penner LA, Albrecht TL, et al. Barriers to Clinical Trial Enrollment in Racial and Ethnic Minority Patients With Cancer. Cancer Control 2016; 23:327–337. 
  28. das Nair R, Orr KS, Vedhara K, et al. Exploring recruitment barriers and facilitators in early cancer detection trials: the use of pre-trial focus groups. Trials 2014; 15:98.
  29. Clarke M, Loudon K. Effects on patients of their healthcare practitioner’s or institution’s participation in clinical trials: a systematic review. Trials 2011; 12:16. 
  30. Downing A, Morris EJ, Corrigan N, et al. High hospital research participation and improved colorectal cancer survival outcomes: a population-based study. Gut 2017; 66:89–96. 


The downloadable PDF version of this article is only available to subscribers.

To view this content please login or subscribe