The Evolution of Patient Engagement

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.