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Editorial

wherein we work, we will rarely be able


Are you a successful researcher? to conduct the randomised controlled
trials necessary to answer the impor-
Well, it depends on who’s asking tant questions facing clinicians every
day. Until this happens, there is a risk
that researchers will continue to work
Simon Noble in their individual silos producing poorly
powered studies of little statistical signif-
icance and dubious clinical relevance.
These challenges were recognised
I have, on fi le, a very polite letter from a So how does one defi ne success in the some time ago; in 2004, the National
palliative care journal explaining that it context of palliative care research? By Cancer Research Institute’s (NCRI) stra-
would not be sending my paper out for the number of papers published? The tegic review identified the need to build
review, since it covered a topic that was number of citations a paper generates? research capacity in UK supportive and
not of relevance or interest to the target Through the impact your work has on palliative care (SuPaC) research noting
audience. The editor kindly wished me patient care? Or perhaps through the rec- that only 4.3% of direct spending on can-
every success in my future research. ognition one gets from one’s peers? cer research by NCRI partners was being
That letter had a profound impact on Palliative care is the one area of directed at SuPaC activities. 3 A need for
my academic career. I rationalised that healthcare every patient will eventually more research collaboration and inter-
rather than my rejected paper being of no require; yet the evidence base informing disciplinary working was highlighted
interest to the palliative care readership, our practice is still patchy at best. In the and in response to this, a consortium of
it was just not the right time to consider absence of robust clinical evidence, we NCRI partners set up the Supportive and
the conclusions I had drawn. We are still treat our patients according the best data Palliative Care Research Collaborative
a young specialty; academically even we have; sometimes based on observa- scheme.
more so. Challenging the established tional work, audits or extrapolated from Two collaboratives were awarded
view, however well intentioned, may studies conducted in non-representative funding of £1.9 million over 5 years to
be interpreted as discourteous rather patient groups. increase research capacity in the United
than a pursuit of academic rigour. My The challenges to conducting high- Kingdom, commencing in 2006. In this
resolve was further strengthened when quality research have been discussed issue of BMJ Supportive and Palliative Care,
later that year an Australian gastroenter- extensively in the literature.2 Identifying members of the Cancer Experiences
ologist Barry Marshall along with Robin the population that is to be studied can Collaborative (CeCo) evaluate their suc-
Warren was awarded the Nobel Prize for be difficult since no universally accepted cess of research capacity building (RCB)
Medicine for the discovery of Helicobacter defi nition of the ‘palliative care patient’ against Cooke’s six principles of RCB,
pylori and its role in gastritis and peptic exists within clinical or research settings. namely training, supporting research
ulcer disease. Initially published in the Likewise, the holistic nature of our spe- close to practice, establishing collabora-
Lancet in 1982, Marshall’s work attracted cialty is such that the pathophysiology of tions, dissemination, sustainability and
little interest at the time.1 The majority common symptoms are recognised to be infrastructure.4 Their paper asserts that
of the medical establishment rejected complex and multifaceted, encompassing their activities have contributed signifi-
his work with one prominent gastro- spiritual, psychological and social com- cantly to RCB, in particular through edu-
enterologist branding him ‘a crazy guy ponents to the physical manifestation of cational activity, grant acquisition and
saying crazy things.’ It wasn’t until 1994 common symptoms. Studies to improve dissemination of results through peer-re-
that the causative association between the symptom burden in palliative care, viewed journals. What neither Cooke nor
H pylori and peptic ulcer disease became therefore, may require novel methodolo- the NCRI are clear about is the degree to
widely accepted, and the use of eradi- gies alongside complex interventions and which one should deliver on each cat-
cation therapy transformed the lives of evaluations; outcome measures embedded egory to make the grade.
millions of patients worldwide. within cancer studies may not be appro- With a grant acquisition of just under
The moral of this tale is not that priate in people with advanced disease. £19 million over 5 years and 547 publica-
if you wait long enough, your previ- The ethical issues around research in tions, the collaborative’s success against
ously ridiculed research will earn you the hospice setting have been suggested these outcomes is impressive. The
a date in Stockholm, courtesy of the as a barrier to palliative care research for authors identify that 18% of grants and
Swedish Academy. Rather, it highlights some time and are often cited as a key 15% of publications arose directly from
two important points about research: reason for poor recruitment to trials. CeCo activities, and argue the majority
fi rst, some ideas are ahead of their time The fact that such paternalistic practices arising indirectly from CeCo activities
and not readily accepted by the scien- further prevent the pursuit of evidence- demonstrates the ‘added value of the intra-
tific community. Second, the impact of based treatments for our patients is structure support, networking, meth-
new research may take several years to ethically difficult to justify. Participant odological expertise and senior research
manifest. attrition has frequently been cited as a mentorship that accrued from this col-
reason for failure to complete studies, laborative’. What will never be known is
when often the failure is a reflection of how many of these successes would have
the study design and execution. been realised without the CeCo collabor-
Correspondence to Simon Noble, Palliative
Medicine, Cardiff University, Royal Gwent Hospital,
The bottom line is this: until research ative; with the original grant applicants
Cardiff Rd, Newport NP202UB, UK; Simon.Noble@ in our specialty becomes custom and including eight professors, academics
wales.nhs.uk practice in all the healthcare settings arguably at the top of their game, with

BMJ Supportive & Palliative Care September 2012 Vol 2 No 3 207


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Editorial

already established credentials in grants- different to those in 2004. As the authors the research questions they ask are sim-
manship and publishing papers. It is not correctly conclude, the ongoing ‘chal- ple, focused and relevant. Already we are
clear how much of the grant income was lenge is to retain collaboration to support seeing their endeavors disseminated in
through open peer-reviewed competition RCB rather than revert to small scale high-impact academic journals. So once
and thus entitled to ‘badging’ under the single researcher studies with potentially again, as with Barry Marshall, I take my
auspices of the NCRI. This is important less impact.’ inspiration from down under.
since such quality measure brings with It is beyond the scope of this paper, to ‘And how did it go with that rejected
it National Health Service infrastructure evaluate how evenly the collaborative paper?’ you may ask. Well, I waited a while
and trials support. programme has built research capacity and then published it somewhere else.6
Success will differ according to the cri- across the whole UK; of the 23 NCRI Competing interests None.
teria against which it is measured; CeCo funding partners, four contribute monies Provenance and peer review Commissioned;
members will also need to prove their specifically from the devolved nations, internally peer reviewed.
worth within their own academic insti- and the majority of the others have Accepted 16 June 2012
tutions. With the Research Excellence fundraising activities beyond England Published Online First 16 July 2012
Framework (REF) 2014 just around the alone. It would be an interesting exercise BMJ Supportive & Palliative Care 2012;2:207–208.
corner, universities have an expectation to evaluate the degree to which RCB in doi:10.1136/bmjspcare-2012-000301
of their staff to return publications in Northern Ireland, Scotland and Wales
high-impact-factor journals and dem- has developed through this strategy. REFERENCES
onstrate an impact of their research on From their paper, CeCo appear to have 1. Marshall BJ, Warren JR. Unidentified curved bacilli
in the stomach of patients with gastritis and peptic
practice. Of the 547 papers published, delivered what was asked of them by
ulceration. Lancet 1984;1:1311–1315.
it would be interesting to know how the NCRI, and one hopes that the end 2. Jordhøy MS, Kaasa S, Fayers P, et al. Challenges
many of these would be REF returnable; of the collaborative funding stream can in palliative care research; recruitment, attrition and
an author of four high-quality academic be viewed as the beginning of a new compliance: experience from a randomized controlled
papers will evaluate better than someone era in SuPaC research within the UK. trial. Palliat Med 1999;13:299–310.
3. National Cancer Research Institute. Supportive and
producing considerably more publica- However, if we aspire to undertake high- palliative care research in the UK: Report of theNCRI
tions in lower-impact journals. quality research we should now consider strategic planning group on supportive and palliative
The true success of the RCB strategy whether our focus would be better aimed care. London: NCRI 2004.
will not become apparent until we can at developing and supporting more ran- 4. Payne S, Seymour J, Grande G, et al. An evaluation
of research capacity building from the Cancer
evaluate whether the outputs of the col- domised clinical trial activity. This has
Experiences Collaborative. BMJ Supp Pall Care.
laboratives are sustained. Only in time, been done successfully by colleagues in 5. Shelby-James TM, Hardy J, Agar M, et al. Designing
will we see if researchers supported by Australia for some time. 5 In a continent and conducting randomized controlled trials in
the collaborative maintain and grow their 31 times larger than the UK, yet with one- palliative care: a summary of discussions from the
activities and continue to work across third the population, the colleagues from 2010 clinical research forum of the Australian Palliative
Care Clinical Studies Collaborative. Palliat Med 2011.
institutions as intended. One would sin- the Australian Palliative Care Clinical 6. Noble SI, Nelson A, Turner C, et al. Acceptability of
cerely hope that if the NCRI were to con- Studies Collaborative are successfully low molecular weight heparin thromboprophylaxis for
duct a review of SuPaC research in the recruiting to a programme of appropri- inpatients receiving palliative care: qualitative study.
future, its fi ndings would be considerably ately powered randomised control trials; BMJ 2006;332:577–580.

208 BMJ Supportive & Palliative Care September 2012 Vol 2 No 3


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Are you a successful researcher? Well, it


depends on who's asking
Simon Noble

BMJ Support Palliat Care 2012 2: 207-208 originally published online July
16, 2012
doi: 10.1136/bmjspcare-2012-000301

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