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The importance of patient engagement

The importance of patient engagement: an interview with Daniel De Schryver

This aritcle first appeared on The Evidence Base on 11 February 2022

This interview with Daniel De Schryver, Patient Engagement and Advocacy lead at Janssen (Beerse, Belgium) explores the benefits of patient engagement for overall healthcare, real-world evidence (RWE) and real-world data (RWD), alongside where change is still needed to improve engagement in times to come.

Please could you introduce yourself, your organization(s) and provide a brief summary of your career to date?

I’m Daniel De Schryver, and at Janssen I am part of a global, multi-functional leadership team that helps the company to engage with patients in a systematic way builds partnerships beneficial for developing solutions to meet unfulfilled needs. Alongside this, I also lead a group of colleagues in the region who play a crucial role in working towards a more collaborative approach in healthcare innovation.

When I joined Johnson & Johnson in 2001 as Director Corporate Communications, I was initially working in the field of oncology. In 2006, I transitioned over to Janssen, working in the infectious diseases area to maintain and enhance the company’s relationships with the HIV patient community. Later on in my tenure at Janssen, I have built the external relationships in the field of Hepatitis C, before becoming the Global Therapeutic Area Communications Leader Infectious Diseases and Vaccines. In this role, I develop worldwide strategic communications and public affairs programs about infectious diseases and global public health.

What are some benefits of patient engagement for RWD/E?

For me, patient experience outcomes are the ultimate measurement of the value of healthcare.

Exploring the potential of RWD and RWE for healthcare improvement means we are able to measure benefits that are meaningful to patients and help improve their care and experience. Ultimately, RWD and RWE help us create a more effective and efficient healthcare system for all.

Engaging patients in this process can include co-designing digital health solutions, empowering patients’ access to, ownership and control of their data, or committing to safe and ethical use and sharing of health data.

Being inclusive of patients also helps build trust between the patient community and industry, empowers patients to be more active and autonomous in advocating for their own care. Engagement also increases opportunities for industry to collaborate with, and gain valuable insights from, the patient community.

How can we ensure that patient engagement is consistent in improving RWD/E?

Patient input helps ensure RWD and RWE are focused on gathering information on what really matters to patients and the inclusion of insights across the research and development continuum is invaluable. Ultimately, we run these studies to better understand how our medicines and solutions work in real-world settings; I don’t think we can do that accurately without involving those who take them.

This includes engaging with patients to co-create clinical trial designs and reviewing which patient-reported outcomes (PROs) and other measures of benefit are truly vital to real patients. There are also opportunities to co-create with patient advocacy groups to align on what data is collected and how. By doing this, we know we’re delivering healthcare solutions that are meaningful to patients, improving their overall experience.

Do changes in market access and regulatory bodies influence patient engagement? Is there anything these areas should be doing?

A holistic approach must be taken to build understanding and trust so healthcare systems can provide solutions that deliver value from the patient perspective. Currently, I see a gap in the healthcare continuum with regulatory bodies and payers where this could be optimized.

Regulatory bodies are increasingly valuing patient perspectives and providing patient-focused drug development guidance[1], which reinforces patient engagement as a regular practice. I’d like to see the approach from regulatory bodies and payers continue to evolve to listen to and integrate the patient voice more actively and consistently in their decision-making processes, where possible, to establish patient engagement as an expected practice. This could utilize advisory boards, patient input into health technology assessments (HTA) and more. The US FDA has created a framework called the Patient-Focused Drug Development Initiative to better incorporate the patient’s voice in drug development and evaluation.[1] There is also evidence of progress being made by making it easier for patient advocacy groups (PAGs) to contribute to HTA appraisals of new medicines, using the example of the HTAi International Summary of Information for Patients (SIP).[2]

The HTAi SIP, developed by the HTAi Patient and Citizen’s Involvement Group with input from industry, HTA bodies and patient group representatives, is an important step forward in supporting patients and patient groups in ensuring a common level of understanding of new medicines entering into the HTA process.[2] The International SIP is a key enabler to manufacturers being able to share relevant information with patients and patient Groups, written using plain language that will be easily understood by a lay audience.[2]

The requirement to provide information in this way should help overcome any divergence in health literacy levels between different stakeholders, ensuring a common level of understanding of the disease and treatments. As a result, stakeholders can more confidently and fully engage in important discussions. Janssen was recently involved in a pilot with NICE (London, UK) where we worked closely with a Health Literacy Agency called the National Adult Literacy Agency (NALA, Dublin, Ireland) in developing two SIPs. One was for a treatment for patients with relapsed refractory multiple myeloma; another was for a treatment for with people living with Amyloid light-chain amyloidosis. It will be important that other HTA agencies beyond NICE and the Pharmaceutical Benefits Advisory Committee (Canberra, Australia) consider incorporating the HTAi SIP into their established processes.

What are some of the key challenges within patient engagement? Any thoughts on how we could overcome them?

Patients provide a key voice in contributing to the debate on how healthcare systems can evolve and become more future-proofed. However, successfully implementing changes on such a scale takes time. Internally, companies must review and evolve their internal processes to embed patient engagement more deeply into their activities and operations. Establishing relevant key performance indicators around patient engagement and closely monitoring and finessing these are also key building blocks to ensuring patient inclusion.

Externally, as part of the wider debate, including different perspectives from patient experts who can envision future innovations in healthcare is invaluable. This approach will help people align on the balance of short-term wins against maintaining focus on the long-term mission and how to best navigate these two contrasts. With the probable increase of demand for patient experts, we must seek to broaden this expertise, not only just the breadth of knowledge, but also the actual pool of experts available. This will enable us to respond to the challenges appropriately.

Looking back over the COVID-19 pandemic, do you feel that patient engagement has changed as a result? Positively or negatively?

Like many aspects of healthcare, patient engagement has adapted from being in-person to happening in a virtual setting.

To address this need as an industry partner, we had to become more agile and creative in the way we communicated with patients to deepen the two-way dialogue and really understand how the needs of patients and PAGs were evolving.

Two positive results of engaging remotely were patients feeling less isolated, because they were engaging with other patients and industry through technology, and the ability to gather global perspectives more efficiently, although this is not a substitute for in-person interactions.

I hope we learn from the new ways of engaging patients in a more virtual setting – both the challenges experienced and the opportunities possible – and leverage these to impact our activities positively in the future.

How do you see patient engagement evolving over the next 5–10 years?

Over the next few years, I see patient engagement 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. This is due to several factors, though perhaps predominantly because of the importance of co-creating with patients and being able to use RWD and RWE as powerful tools to deepen patient engagement.

We’ve witnessed how digital healthcare solutions, such as telemedicine, remote patient monitoring and virtual recording of patient data, have been turbo charged over the last 18 months. I think we’ll continue to see a reliance on this, as digital tools allow for real-time reporting.

Looking ahead, I see a growing importance and potential of big data, from collection to analysis, as this has proved to be a fundamental aspect of disease monitoring and modelling today and will evolve in the future of healthcare.

It’s crucial for the whole healthcare system to adapt. Governments, pharma, academia and regulatory bodies should recognize the key role patients have in shaping this evolution.

This aritcle first appeared on The Evidence Base on 11 February 2022


[1] U.S. Food & Drug Administration. CDER Patient-Focused Drug Development. Accessed 18 November 2021

[2] Health Technology Assessment International. Current projects. Accessed 18 November 2021