The National Cancer Research Institute (NCRI) has led the way in involving patients, carers and other people with experience of cancer in research, improving the quality and relevance of cancer research in the UK.
The word consumer used to describe the patients, carers and people with experience of cancer, who sit on the NCRI Groups, has long roots that go back as far as NCRI itself. The term was chosen as a sign of the commitment not only to hear but to heed the lay voice. The word “consumer” was a reminder of the relationship between publicly funded cancer research organisations, charities and health services funded by donations and taxes respectively, and the general public. It was to remind those organisations not only of who funds their research, but also who their research should benefit.
There are long-standing objections to the term, so why does NCRI use it and are there better alternatives?
People with lived experience of cancer
The NCRI Consumer Forum provides a structure for those with an interest in cancer as a layperson to share experiences. The Consumer Forum now numbers over 100 people, with more than half active on NCRI Groups, the remainder having served their time working directly with NCRI but still working in other areas of cancer research.
Perhaps we should explain what they do?
- NCRI Consumers input into NCRI and Partner research activities, committees and groups, as equal and valued partners
- They regularly attend and actively participate in NCRI Group meetings, assisting the NCRI Groups in understanding the perspectives of patients, carers and the public
- They provide a ‘plain language’ eye to clinical trial communications, especially study protocols, applications for funding, and patient consent information
- They can inspire or initiate a research idea and help develop the idea into a clinical trial
- They attend and participate in Dragon’s Den events, where they discuss proposals or challenges with researchers and provide feedback
- They act as ambassadors for NCRI activities
In defence of the term consumer
NCRI use the term consumer because it is a non-specific way of describing patients, carers, bereaved and long-term survivors while capturing the ‘lived experience’ values.
Cochrane acknowledges the debate around the term consumer, and to not be derailed by linguistic divisions, exclude, confuse or offend, have explained the terms they use in this article: What’s in a name? Patients, people and the power of words.
Roger Wilson CBE founded Sarcoma UK in 2003 and is actively involved with NCRI through the NCRI Consumer Forum, which he chaired from 2004-07. Roger has written a blog In praise of the ‘consumer’ in which he debates the semantics of patient involvement, centring around the terms used to describe them.
The difficulties with the term consumer
In economics and marketing (and to those not involved cancer research) a consumer is someone that purchases goods and services for use. ‘Consumer’ might also be associated with someone that eats or uses something, e.g. “Scandinavians are the largest consumers of rye”. In standard definition ‘consumer’ also implies an element of choice. No one chooses to have cancer or to have to make choices about their care. However, NCRI Consumers do decide to become involved with cancer research, and it is research, not cancer that is the product “consumed”.
There is also an argument that the semantics of the word consumer detracts from the compassion and trust, which is at the heart of medicine. However, NCRI Consumers argue that their role is in research, service-delivery or provision of care rather than providing support.
The debate around the alternatives
While NCRI acknowledges that the term consumer is imperfect, there is currently no alternative solution that captures the specific context. It is worth noting that the term used by NCRI is “NCRI Consumer”, not merely “consumer”.
A selection of terms used to refer to ‘lay people’ in research and clinical governance are defined here:
Greenhalgh T. 2017. How to implement evidence-based healthcare. Oxford: John Wiley & Sons Ltd.
NCRI has considered many alternative terms, each with pros, cons and sensitivities:
Patients – The one size fits all description of ‘patients’ does not reflect the range of experiences those who are involved with cancer research through NCRI have. The NCRI Consumer Forum comprises those living with or beyond cancer, and who have cared for or are currently caring for relatives and loved ones who have or have had cancer.
Research Partner – Research Partners is a term used by some Clinical Trials Units and is used in the supportive and palliative care community. For NCRI, this term is at odds with the ‘Partners’ who make up NCRI, who fund cancer research in the UK, and who want to work together to coordinate their research.
Patient Advocate – Widely used in Europe; however, this term also has its problems. Not all patients working in research are advocates, and not all advocates are patients, the term doesn’t take account of the depth of experience each individual may bring. In the UK, it is used widely in Mental Health care and by extension, mental health research too, which was a factor in the NCRI choosing not to adopt it.
Patient Research Ambassadors – The National Institute for Health Research has Patient Research Ambassadors who support the front-line hospitals and research clinicians, encouraging accrual into studies. This is different from the way NCRI works with its consumers, who support the development of major clinical studies.
Patient and Public Involvement – Covering those who have a direct and broader experience of cancer, the term Patient and Public Involvement is another that receives negative feedback. Partly because of its acronym, PPI, which also stands for Payment Protection Insurance, but also because it is increasingly used as a noun (“who is our PPI on this project?”). It is also argued that ‘patient involvement’ and ‘public involvement’ are fundamentally different activities which have been conflated for administrative convenience.
One size does not fit all
Unfortunately, there is no commonly agreed term. However, at NCRI, we are always listening to feedback on this and many other topics. We want to work with stakeholders to ensure that we keep moving the agenda forward, involve our NCRI Consumers and praise the work that they do, and that is also true for patients, carers and others who are involved in cancer research beyond NCRI. If you would like to get in touch about this topic, please email us.