New survey of 124 patient and carer group representatives explores increasing need for accessible scientific information for individuals with cancer and their families.
The growing complexity of cancer science is putting pressure on the ability of patient organisations and healthcare professionals to easily communicate key concepts to patients and the general public, according to a recent survey of 124 patient and carer group representatives.
AstraZeneca commissioned the survey from PatientView to better understand how the patient and carer community view the landscape in terms of science communications. In particular, the survey was designed to explore their understanding of the science behind cancer; where information can be provided in a more consistent and cohesive way; and how patient groups share that information – not only with their own networks – but with the broader general public.
Results found that keeping in touch with the latest developments in the cancer arena through close collaboration and relationships with peer patient organisations, academics, medical professionals and industry is critical to accessing scientific information. This was closely followed by being able to clearly communicate this in-depth scientific information to a variety of stakeholders, including patient communities, the general public and policymakers.
Understanding the science behind cancer
Although more than half of cancer patient groups (51%) believe that understanding of this therapy area has accelerated in recent years1, as many as 60% believe society does not do a good enough job of explaining the science behind the disease to either patients or the public1.
Even experienced – or expert – patients say they find cancer science hard to understand and, as a consequence, may not fully comprehend what to do with the information they receive.
The majority of patient groups (59%) believe that educating cancer patients about their disease, the science behind it, and how their treatment works should be a priority1. Indeed, understanding the relevant scientific concepts is fundamental if patients are to better manage their cancer and improve both health outcomes and quality of life, they say.
Evolving science requires better education and communication
Certainly, the complex understanding required by cancer patient & carer organisations was aptly demonstrated in the finding that 82% of survey respondents have been asked for more information about immuno-oncology1, 67% have been asked about genetic mutations relating to cancer1 and 67% have been asked about biomarkers1. This alongside a range of other scientific issues from antibody-drug conjugates through to clinical trial endpoints. As one participant from a national breast cancer patient group commented, “This is basic science that should be common knowledge, but isn’t! This information should be promoted to the masses.” 1
The vast majority of cancer patient groups say they find their own organisations, healthcare professionals and patients are all “useful” or “quite useful” sources of information on cancer science1. Pharmaceutical companies were ninth on the listing1, with 25% of patient groups considering them to be a “useful” source of information and 52% “quite useful” 1. There is clearly a gap and all stakeholders share the responsibility of closing this gap.
Looking in more detail, information on the risks and benefits of treatment (54%) and the types of treatments available for cancer (53%) are most valued by patient & carer organisations1. However, more than a quarter (26%) of survey participants feel they would benefit from access to scientific information throughout the patient journey, from pre-diagnosis, to diagnosis, to treatment and ongoing management1. The ultimate aim, they say, is to increase awareness of cancer treatment options, enable informed decision-making and promote healthy behaviours1.
Pharma has a part to play
So can industry play a greater role in providing user-friendly scientific information on cancer and make it more readily available to patients and the public? The resounding answer from the survey was “yes” 1.
Providing simple, accurate, patient-friendly and tailored materials in engaging formats and local languages would go a long way toward meeting the needs of both patients and patient and carer organisations throughout the care pathway – from early symptoms and risk factors, to reliable and timely information on clinical trials, to managing treatment options – they point out.
As the survey shows, the need is there – systematic information sharing and long-term collaboration among all the key stakeholders in the cancer community is next.
124 cancer patient and carer group representatives from 39 countries and across all major continents took part in the study, covering a host of tumour specialties from the common to the rare. The vast majority of participants (almost 67%) headed up their organisations, with other key responsibilities including patient support and education, patient advocacy, media communications and government affairs/policy matters.
- Use of Scientific Information About Cancer Among Carers, Patients and the Public. A PatientView survey of Patient Organisations Commissioned and funded by AstraZeneca
Page Atlas ID: 1012976.011
Date of preparation: 06 October 2016
Date of expiry: 06 October 2017