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Embedding the patient perspective throughout healthcare

Embedding the patient perspective throughout healthcare

‘Nothing about us without us.’

It’s a phrase you may hear from patient groups, and with very good reason. Embedding the patient perspective in all aspects of healthcare is not yet a given, even though it might seem like an obvious thing to do. But if we want to see transformation in our healthcare systems, it’s vital.

So it’s been great to see that focus front and centre recently, as several Janssen colleagues have taken to the stage.

Expectation and experience

At the World Evidence, Pricing & Access Congress in March, Christoph Glaetzer, Chief Global Value & Access Officer, talked about how a treatment’s full value is defined through the dynamic interplay of expectations and experience, and how it’s crucial to hear from patients at all stages of drug development.

Christoph discussed how patient and caregiver perspective can:

  • Help identify unmet needs

  • Educate us about the existing care journey

  • Help us demonstrate value to regulators through Patient Reported Outcomes

  • Contribute to our decision-making to ensure the next generation of treatments addresses patient and caregiver needs

  • Track real world evidence following approval

Good progress has been made in some of these areas over the past decade or so, but there is room for improvement in others.

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Measuring the SAS

At Reuters Events: Pharma 2023 in April, Patrick Laroche, VP Medical Affairs Operational Excellence Strategy EMEA, talked about the SAS. Not, you’ll be relieved to hear, the British special forces regiment or Scandinavian Airlines, but rather Janssen’s Scientific Alignment Score.

We measure our SAS periodically to keep aligned with how leading specialists view the evidence and patient characteristics of a given disease area.

And this means not just discussing data, but patient realities – the obstacles preventing adequate patient management, for example. It helps us to identify educational needs and evidence gaps, with the ultimate goal, of course, of informing healthcare professionals and helping patients to receive the best available care.

That’s a RAPP

Also at Reuters, Wafae Iraqi, Janssen EMEA Patient Engagement Lead, discussed the RAPP project. RAPP is an initiative of WECAN (Workgroup of European Cancer Patient Advocacy Networks), which looks to enable fair and Reasonable legal Agreements between Patients and Pharma to optimise patient engagement.

On behalf of WECAN, Ananda Plate invited Wafae to join the session because – as Ananda puts it – Janssen was one of the pioneering companies who are adapting their contracts to the WECAN Guiding Principles on Legal Agreements, and Wafae has been very committed to this, spending a lot of time negotiating these contracts from the industry side, and genuinely trying to understand both the patient community’s and the company’s positions.

A hugely encouraging testament to hard work, partnership and collaboration.

The drug spend myth

Christoph Glaetzer has been quite busy in the EMEA recently. He hit Reuters too, delivering a keynote address about how policy changes can affect patients, and debunking the myth that increased healthcare costs are driven by increased spend on medicines.

“It's not the drug spend, it’s the healthcare system overall that we need to look at,” Christoph said, noting that pharmaceutical expenditure as a proportion of overall healthcare costs has remained either flat or reduced in most European countries since 2000[1].

He cautioned that misconceptions are driving austerity measures, which could have the unintended consequence of reducing investment in innovative treatments that patients rely upon, impacting future generations as well as the current.

Put simply, healthcare and medicines need to be seen as an investment into a healthy and flourishing society and not as the piggy bank for solving budget issues and shortfalls.

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Rare opportunities

Last but by no means least, Jennifer Lee, Therapy Area Market Access Leader EMEA, joined a panel at Economist Impact’s inaugural Cell & Gene Therapy Summit in April, looking at how we can improve patient access to transformative cell and gene therapies.

Janssen hosted another panel at the Summit, exploring how payers, policymakers, and healthcare technology assessment bodies must collaborate, if we are to invest in therapies aimed at pre-emptively treating people.

And in May, Jenn joined the Institute of Internal & European Affairs discussion series about Ireland and the European Health Union, focusing on rare diseases. Here, she talked about rare disease treatment and standards of care, legislation and needed reforms, and reinforced Janssen Ireland’s position as a thought leader in this area.

Many thanks and well done to all our colleagues, for driving the debate and keeping patients firmly at the forefront.

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