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Why the patient voice is essential in cancer care, now and for the future

Why the patient voice is essential in cancer care, now and for the future

Every year, World Cancer Day provides a moment to reflect on the progress we've made in tackling this challenging condition and to push ourselves to go further, faster and with a renewed sense of purpose as we work towards making cancer a manageable and, ultimately, curable condition. As the Oncology Therapeutic Area Lead, it also serves to remind me of Janssen’s absolute commitment to innovation, especially in areas where we can make the most meaningful impact as we work to bring the right treatment to the right patient at the right time.  

Yet if we're to truly change the expectation of what a cancer diagnosis means, we also must look beyond what we discover in our laboratories and find ways to better engage and address the needs of patients and their carers throughout the treatment lifecycle – from clinical trial design and the establishment of endpoints to regulatory conversations and everyday consultations with healthcare professionals (HCPs).

But what does greater patient engagement actually look like? To answer this question, I sat down with Janssen EMEA’s Patient Engagement & Advocacy Lead, Daniel De Schryver, to discuss progress towards making solutions with patients, not just for patients. He also explains how his own experiences of living with bladder cancer has reinforced his belief that an increased emphasis on engagement is vital to improving healthcare outcomes for all.

If we think about bladder cancer treatment specifically, why is patient engagement so important?

Bladder cancer affects a significant number of people – in fact, there are around half a million new diagnoses worldwide every year.[1] But what makes it especially challenging is that like other cancer types, each patient is unique, experiencing the disease in a range of ways, meaning the right treatment for one patient often won’t be right for another.[2]

For example, among people diagnosed with non-muscle invasive bladder cancer (NMIBC), such as myself, HCPs must identify those most likely to progress to a more invasive form, then treat them accordingly.[3] For patients already experiencing muscle invasive bladder cancer (MIBC), HCPs must determine if they can be treated while still preserving the bladder.[4] And for people with metastatic urothelial carcinoma (mUC), the challenge is to match the best treatment to the right patient, targeting the specific abnormalities of their disease.[5]In each case, these choices can have a huge impact on the patient's survival and quality of life – which is why involving them in shared decision-making at every stage of the process is so critical.[6]

What do you mean by shared decision-making and how can it help to improve bladder cancer patient outcomes?

For patients and their carers, shared decision-making means taking an active role in their own care, starting with the opportunity to have open, transparent conversations with healthcare professionals, patient groups and individuals who have been through similar experiences. Doing so allows patients to better understand the various treatment options available to them following a diagnosis, along with how they can expect cancer to impact their daily life – from their sex life and relationships, to their professional lives, to the quality of their sleep and ability to continue hobbies, like sport and travel.[6]

It can also help patients avoid things that might make an already stressful situation worse. For example, I remember coming home from a hospital appointment with a medicine package that said it had to be kept in the fridge – but it was too big to fit which made me very anxious. So I just dismantled the package and put all the separate parts in the fridge...only to find out during my next meeting with the nurse that only a tiny vial from the pack needed to be refrigerated. A clearer label or a conversation with someone who had been through the same thing could have helped me avoid that extra worry.

Keeping patients engaged in their cancer care also helps them feel empowered to have more informed discussions with their HCP about the optimal treatment pathways for them. In the case of bladder cancer, each diagnosis has a unique treatment approach which depends on risk of recurrence and progression.[3],[8] These factors will determine the course of treatment that is taken such as bladder removal and another that uses a tri-modality treatment of chemotherapy, radiotherapy and trans urethral resection of bladder tumour (TURBT) to try to preserve the bladder or an entirely different treatment course.[7] Any treatment approach carries risks and benefits beyond simply survival, and not every patient will reach the same conclusion. But the value in shared decision-making is that patients are empowered to make choices, when able, according to what best suits their personal circumstances and lifestyle.

Why is World Cancer Day so significant, and how can companies like Janssen champion patient engagement and shared decision-making to improve cancer care?

For companies like Janssen, we have a responsibility to listen to patients and their carers, HCPs, and patient organisations about the challenges they face, then do whatever we can to support them in giving patients a voice across the different stages of the treatment journey. Furthermore, as carers are integral to the patient’s journey and provide invaluable support, championing shared decision-making benefits both the patient and their wider support network by giving them a full picture before embarking on a particular treatment pathway.

This starts with helping to raise awareness of symptoms – for both HCPs and the general public more broadly – especially with a disease like bladder cancer where the warning signs can be non-specific and easily missed.[9] The better people understand the symptoms to look out for, the more likely they are to receive an early diagnosis, which remains one of the most important influencing factors for positive outcomes.[10]

As an industry, we also need to continue to foster collaboration with patient advocacy groups and other industry partners, and work closely with patients, HCPs and patient groups to learn about the real needs and lived experiences of patients – this is something we do across the region, such as a recent partnership with Lung Cancer Europe (LuCE). We must also collaborate to raise awareness of different cancers and alleviate stigma and fear associated with knowledge gaps for both patients and the general public more broadly. By working together, we can ensure we're incorporating patient needs at every stage of the research and development process for new treatments, which in turn makes them more likely to be effective in meeting unmet needs. What's more, when a patient helps co-create a solution that improves their own health, it often benefits many other patients, thereby contributing to greater satisfaction and a healthier future for all – making the words “you have cancer” a less terrifying reality.

In both cases, the added profile of a moment like World Cancer Day can really help. First, it provides a platform to spread those vital messages around symptoms and early warning signs. Second, it can help highlight the unmet needs and informational barriers that stop people accessing the care and treatment they require.  And third, it can inspire more patients and HCPs to connect with patient advocacy groups like the World Bladder Cancer Coalition following diagnosis – something we know can have a positive impact on outcomes and quality of life.

How do you think patent engagement may evolve over the next few years?

I see it increasing substantially, both in terms of the quantity of initiatives and the quality of the engagement. I also foresee patient engagement becoming the standard operating procedure throughout healthcare systems, from R&D and involvement in regulatory and access decisions, to the development of new solutions and educational information.

But for that to happen, we all must adapt. Healthcare is often a system of silos, and what can get lost in the gaps is the input of patients themselves. As pharmaceutical companies, patients, healthcare providers and governments, we share a well-established common purpose: the desire to make disease a thing of the past. It's up to all of us to ensure patients have an active seat at the table and a powerful voice in paving the way forward to achieve our shared vision.


[1] World Bladder Cancer Patient Coalition. GLOBOCAN 2020: Bladder cancer 10th most commonly diagnosed worldwide. Available at: Last accessed: January 2023.

[2] Lavallee, Etienne et al. “Tumor Heterogeneity and Consequences for Bladder Cancer Treatment.” Cancers vol. 13,21 5297.

[3] NCI. Bladder cancer treatment (PDQ ®) - Health professional version. Available at: Last accessed: January 2023.

[4] Portner R, et al. A practical approach to bladder preservation with hypofractionated radiotherapy for localised muscle-invasive bladder cancer. Clinical and Translational Radiation Oncology 2021; 31: 1-7.

[5] Tassinari E, et al. Treatment options for metastatic urothelial carcinoma after first-line chemotherapy. Cancer Management and Research. 2022;13: 1945-1960.

[6] American Cancer Society. Bladder Cancer: Treating Bladder Cancer. Available at: Last accessed: January 2023.

[7] Tanaka H, et al. Bladder preservation therapy in muscle-invasive bladder cancer: current evidence and future perspectives. AMJ. 2020;5(16).

[8] Sanli O et al. Bladder Cancer. Nat Rev Dis Primers. 2017; 13(3): 17022.

[9] American Cancer Society. Can Bladder Cancer Be Found Early? Available at: Last accessed: January 2023.

[10] World Bladder Cancer Patient Coalition. Capturing the patient and carer experiences of living with bladder cancer across the world. Available at: Last accessed: January 2023.