The Evolution of Patient Engagement

Published on:
February 10, 2022
Annabel de Maria

Annabel de Maria

Chief Patient Officer at Alira Health

Interview with Annabel de Maria, Chief Patient Officer of Alira Health

Patient engagement is becoming more critical than ever in successfully delivering a drug or device to market. To learn how patient engagement is evolving and what is next for it, we talked to Annabel de Maria, industry expert in the field with over 25 year of experience and Chief Patient Officer of Alira Health.

How did you come to work in patient engagement?

Annabel: My journey in patient engagement started 22 years ago when we launched the first Erectile Dysfunction treatment in Spain—and the launch completely failed. Patients didn’t show up to their doctor appointments, and we had to go back and ask them why. Patients explained they didn’t want to have the Erective Dysfunction conversation with their doctor. Knowing this allowed us to understand how we could better support patients in the process.

That launch changed the way I viewed marketing and communications in biopharma—I understood that unless I was able to create a full picture of the patient journey, regardless of disease, bringing a new drug to market could fail. And, most importantly, it is the patients who can best explain their needs, so it’s critical to engage them at the very beginning of the lifecycle management. So, I’ve dedicated my life to engaging patients in the development process, making sure all the products I contribute to become truly valuable for patients and successful for the companies bringing them to the market.

You are heading a dedicated Patient Engagement practice in Alira Health – why did the company decide to take a decision to create this dedicated team? 

Annabel: At Alira Health, we truly believe that patients are at the center of everything we do. We created this practice to provide that patient-centric layer to our existing practices, like clinical research, global market access, regulatory, and Real-World Evidence.

We help our clients bring the vision and the experience of the patient into each stage of the lifecycle management of a drug or medtech device so they can secure better outcomes for patients.

When did patient engagement really come into focus?

Annabel: When I look back 25 years ago, biopharma’s relationship with patient associations was mostly for disease awareness campaigns. They did not focus on the importance of the vision of the patient and did not strive to include the voice of the patient in the product development lifecycle.

Regulatory bodies were the first to engage patients directly. Over the last 10 years, there’s been significant improvement in regulators including patient voices on their boards. Today we see at the EMA and FDA level that patients are very present during the assessment of new drugs, as well as during the approval of drugs. Regulatory bodies consult patients, they’re part of the assessment, and they have a voice and an opinion that is being heard.

Where is there still room for more patient inclusion?

Annabel: When it comes to price and reimbursement process at local level, the HTA agencies, we still have far to go. Some of them, like the NICE in the UK, SMC in Scotland, and CADTH in Canada, are more advanced than others. And in the Catalonia region of Spain, patients are very present on the boards of assessing new drugs and even have a vote. For some specific cases in Canada in pCODR, patients also have a vote, notably with cancer treatments. More and more we see the GBA in Germany, the HAS in France and the AEMPS in Spain engaging with patients and consulting them at the time of the assessment. You can learn more about patient engagement in HTAs in our recent report.

And how are companies evolving their patient engagement strategies?

Annabel: When it comes to biopharma companies, specifically, patients have more and more voice. In recent years, these companies have become much more conscious of the role of patients in product development, including them from the clinical research stage getting input on clinical trials—how companies could improve the design, how to avoid dropout rates, and resubmissions of the protocols. Patients are also very present to help companies understand the full patient journey, particularly so they can be aware of the barriers and gaps that patients face.

When a company wants to define its business plans for the global market, it needs more focus on the real needs of the patient and find a way to support them along the full journey.  Biopharmaceuticals are very conscious of this and are involving patients to design patient support programs that will help them in their everyday, real lives. We still have more improvements to make, but we see a lot of companies recognizing and acting on the importance of being patient centered.

How has this evolution changed the relationship between patients and companies?

Annabel: The relationship between patients and companies has really been impacted by patient associations. You can find examples like EURORDIS and the European Patients’ Forum (EPF) in Europe, and the National Health Council (NHC) in the U.S. These powerful advocacy groups are seen by companies as very strong, empowered partners and industry really acknowledges them. A good example is the conferences organized by EURORDIS, EPF, and NHC—these conferences deliver such a high level of content, you can see they’re being taken very seriously by all the stakeholders in healthcare.

How can your organization keep patients engaged at each stage of the lifecycle? We help organizations engage with patients in a compliant manner to maximize product potential, outcomes, and experience. For more information, contact Annabel de Maria, or connect with her on LinkedIn.

Related news

News November 6, 2023
Alira Health Partners with the Patient Empowerment Network Enabling Cancer Patients to Take Control of their Health and Treatment
Alira Health and the Patient Empowerment Network announced their partnership in supporting those impacted by cancer with a mobile platform delivering essential support for their medical needs.
Oncology Patient Advocacy Patient Engagement
Multimedia November 2, 2023
How to Increase Patient Engagement in Your Clinical Trials
Join this webinar hosted by France Biotech to learn best practices and how to overcome challenges in engaging patients in your clinical trial.
Biotech France Patient Engagement
Blog October 16, 2023
How to Co-Design a Solution with Patients to Meet Their Needs
To learn how you can benefit from a co-design approach and how to get started, we spoke with two experts on patient engagement and co-design.
Digital Health MedTech Patient Centricity Patient Engagement Pharma
Multimedia September 25, 2023
How to Co-Design Your Solution With Patients
In this webinar, you'll learn how to identify key solution features, define patient experience expectations, generate evidence, and more!
Patient Engagement
Blog August 28, 2023
Mandatory Patient-Focused Listening Sessions with CMS: What Manufacturers Need to Know
To learn about patient-focused listening sessions, their potential impact, and how manufacturers can prepare, we spoke with our experts.
Drug Development Patient Advocacy Patient Engagement
Case Studies July 11, 2023
Mid-size Pharma Accelerates Early Clinical Trial Engagement of Patients with A Rare Neurological Disease
A mid-size pharma company sought an experienced advisor who could help them engage patients for an open-label extension clinical study in a rare neurological disease.
Clinical Trials Patient Engagement Pharma Rare Disease
News June 29, 2023
Alira Health Partners with LACNETS and the Carcinoid Cancer Foundation to Help NET Cancer Patients Take Control of Their Healthcare Journey
Alira Health, a global advisory and clinical research firm whose mission is to humanize healthcare and life sciences, announced today the addition of the Learn Advocate Connect Neuroendocrine(...)
Patient Advocacy Patient Centricity Patient Engagement Press Release
Welcome to Alira Health. This site is best viewed in Chrome, Microsoft Edge, or Firefox.