In the second article in a series reviewing the recent Innovating to Address Health Inequalities Summit organised by global human data company, IQVIA, the Director of Patient Projects at Prostate Cancer Research, David James talks through tangible ways to bring clinical research to prostate cancer patients.
In the realm of prostate cancer research and patient care, organisations like Prostate Cancer Research are making significant strides to address racial and social inequities. With a focus on reducing disparities and improving shared decision-making, Prostate Cancer Research has launched โthe infopoolโโan innovative, interactive patient information and education platform. This article explores the challenges faced by patients with prostate cancer and how the infopool aims to bridge the gaps in knowledge, treatment options, and access to clinical trials.
Understanding the Challenges:
Prostate cancer presents unique challenges, particularly when it comes to treatment decision-making. Patients are often faced with a complex range of treatment choices, which can be overwhelming and confusing. Additionally, individuals from ethnic minority communities often feel underrepresented and believe that the information they receive does not address their specific needs. Moreover, access to information about clinical trials, which hold the promise of cutting-edge treatments, is limited for many patients.
โProstate cancer is a complicated pathway compared to some other types of disease. This can present real challenges for patients in choosing the right treatment that doesnโt leave them regretting their decision down the line.โ
David James, Director of Patient Projects at Prostate Cancer Research
The Unmet Needs:
Through extensive social research, Prostate Cancer Research identified four key areas of unmet need for people with prostate cancer. First, low health literacy contributes to difficulties in understanding written information, leading to suboptimal treatment adherence and increased healthcare utilisation. Second, the complex nature of the prostate cancer pathway poses challenges for patients in making informed treatment decisions. Third, individuals from the Black community often feel excluded from the co-development of information and report a lack of representation in educational materials. Finally, the limited awareness and accessibility of clinical trials exacerbate the problem of health inequity.
โNavigating your way through treatment options is horrendous, particularly the options that they never tell you about.โ
Tony, a prostate cancer patient
The Infopool Solution:
To address these challenges, Prostate Cancer Research developed the infopool โ an interactive platform designed to empower patients, and enhance shared decision-making. The platform incorporates user-friendly features such as animations, videos, infographics, and illustrations to simplify complex medical concepts. The content is written at a reading level suitable for a broad audience, ensuring accessibility for individuals with low health literacy.
The infopool offers a range of features tailored to the needs of patients. Users can enter relevant information about themselves and access treatment options specific to their circumstances. A comparison tool enables patients to compare different treatments, aiding them in making informed decisions. The platform also provides a vast collection of personal stories from individuals who have experienced prostate cancer, offering a patient-centric perspective and promoting empathy and understanding.
Linking Research and Patient Care:
In conjunction with the infopool, Prostate Cancer Research is launching a patient platform that integrates patient-reported outcome measures with clinical data. By incorporating diverse and inclusive patient populations, this initiative aims to drive research and develop improved treatments for prostate cancer. The infopool plays a crucial role in ensuring the representation of a diverse cohort of patients, fostering inclusivity, and avoiding the pitfalls of an educated majority.
Final Thought
The infopool represents a significant step forward in prostate cancer care and patient empowerment. By addressing the unmet needs of patients, improving health literacy, and providing access to relevant information and resources, the platform aims to reduce disparities in prostate cancer treatment outcomes. With its patient-centric approach and focus on shared decision making, the infopool sets a new standard for patient education and engagement. Through initiatives like this, Prostate Cancer Research continues to make meaningful contributions to the field, ultimately striving for better health outcomes and greater equity in prostate cancer care.
To find out more about the infopool visit: www.theinfopool.co.uk
The full video can be viewed here: