Breaking Barriers to Research Access

The Clatterbridge Cancer Centre NHS Foundation Trust300 enrolled

Overview

There is a need to improve accessibility to research and clinical trials within the NHS. Key groups are consistently under-represented in research: those from minority ethnic backgrounds, those with lower socio-economic status and those with impaired capacity. This leads to inequality of healthcare and an inequality of patient experience. Increasing access to research would not only broaden research opportunities and bridge gaps in health equality; diverse research representation means better understanding of disease mechanisms and greater generalisability of findings across the patient population. There are well described socio-economic issues across the region that this trust serves within Cheshire and Merseyside. This brings health challenges for patients. Clatterbridge Cancer Centre is a large networked cancer centre serving Cheshire and Merseyside using a hub model. Research is a core strategic theme; it is hugely important that it is understood not only the areas and hotspots of cancer across the region, but also that patients with those cancers can access a portfolio of research that serves a distinct patient need. Currently there is a lack of such triangulated information within the Trust, which may mean that patient need remains unmet. Therefore the research is designed to understand any barriers that patients may have in accessing research, in tandem with a demographic review and mapping of patient referral and access to the current trials portfolio. This will lead to a truly patient centred approach in accessing research.

Study Type

OBSERVATIONAL

Enrollment

300

Conditions

Cancer

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

Inclusion Criteria: * Adults over 18 years. No upper age limit * A confirmed diagnosis of cancer * Patient planned to or is receiving treatment at The Clatterbridge Cancer Centre NHS Foundation Trust * Able to provide informed consent Exclusion Criteria: * Patients with severe co-morbidities considered by the screening team to interfere with the individual's ability to complete requirements of the study or to provide informed consent.

Outcomes

Primary Outcomes

Research Barrier Perception and Research Facilitator Perception

The primary outcome measures for the questionnaire portion of the study are the overall scores on Research Barrier Perception (RBP: Questions 7 - 11) and Research Facilitator Perception (RFB: Questions 13 - 17). The predictor variable is deprivation, as measured by the IMD, 2019.

Time frame: 12 Months

Secondary Outcomes

Sub-scores of the Research Participation Questionnaire and are Treatment Perception Scores, Practical Consideration Scores Trust scores, Information scores and Impact scores, and their relationship with deprivation

The secondary outcomes relate to the sub-scores of the Research Participation Questionnaire and are Treatment Perception Scores, Practical Consideration Scores Trust scores, Information scores and Impact scores, and their relationship with deprivation (IMD, 2019) will be assessed using a multivariate regression analysis.