Amplifying Voices: Helen Allvin on Transforming Patient Involvement in Healthcare

Welcome to the latest episode of our Cognitant interview series, where we explore patient engagement and empowerment with thought leaders in the field.

Today, we have the pleasure of introducing Helen Allvin, Global Patient Advocacy Lead at Orion Pharma. Helen, a nurse by background, has a demonstrated history of working in the pharmaceuticals industry across several different positions. Helen has mainly worked in critical care as a Product Manager, Area Manager and Global Brand Manager and, with her patient centric approach, has moved on to Lead the Patient Advocacy and Engagement work at Orion.

Alex: Helen, how did you come to work in a role focused on patient empowerment?

Helen: I started my career as an anaesthesia and intensive care nurse to make a difference. It's not always possible to cure all diseases or save lives, but there is always something you can do to add value to people's lives. For example, as a nurse, you work very closely with patients and their families, listening to them, trying to understand them and get their voices heard in their care. I feel that I've always been a patient advocate. This passion led me to pharma, where I've worked mainly in critical care, and had the opportunity to improve care from another point of view. ?Introducing and changing sedation practices in ICUs, from sedated, less awake patients to more awake, alert, and interactive patients. This change enables better communication with patients and engagement with them in their own care and recovery. My first experience with patient organisations, was during an ALS project, which inspired me to work more actively with patient organisations to ensure the patient's voice was heard by industry, so that together we can develop treatments and solutions that make a difference to their daily life.

Alex: I've heard you mention that you prefer the term "patient involvement" rather than "engagement." Can you explain that?

Helen: Initially, the focus by authorities and industry was on patient centricity, prioritising patients' needs but without having them at the table. Then it shifted to patient engagement, involving patients more actively in their care but still keeping them somewhat out of the decision-making process.? I prefer to talk about "patient involvement," where patients and their representatives are at the table, getting their voices heard and actively participating in their care. This ensures we can really improve patients' quality of life by having them involved in the discussions and decisions.

Alex: So, with your work on rare seizure disorder CDKL5, what is your approach to putting people with the condition at the centre of your work?

Helen: Everything I do is based on insights from patients, caregivers, and the community. I work very closely with patient representatives and caregivers, especially since patients with CDKL5 often cannot communicate by themselves. For example, we brought together patient representatives in a working group, often called an Advisory Board, which works closely with our steering committee of key opinion leaders. This collaboration led to the development of the European patient journey for CDKL5, recently published in Epilepsia Open and the patient representatives were included as authors. Based on the published patient journey, we created a layperson's PDF, to make it more understandable for families, and this has now been translated into additional languages to increase its reach across Europe. We also took a similar approach when undertaking a caregiver survey, to better understand the burden and needs linked to CDKL5 and its impact on caregivers Quality of Life. The data will be published by the end of 2024, beginning of 2025, with patient representatives as authors.

Alex: What advice do you have for healthcare leaders aiming to empower patients in their organisations?

Helen: Foster a patient-centric culture where patients are actively listened to, considering their diversity in ethnicity and culture. Involve patients in decision-making processes and establish reliable communication channels with patients and their caregivers for clear and transparent communication around diagnoses, treatments, and healthcare processes. Personalise care by tailoring services and using data and patient feedback. Build trust and transparency with strong guiding principles for ethical relationships. Adapt telehealth to avoid unnecessary travel and provide more convenient access to care. Finally, embed patient-reported outcomes in medical trials to capture and evaluate patient experiences from the start. These steps create an environment where patients feel empowered and engaged in their healthcare journey.

Alex: If you had a magic wand, what change would you make to accelerate progress in patient engagement—or patient involvement, as you prefer?

Helen: One must is to ensure a seamless integration of electronic health records across all systems. This would allow patients having ?more easily access, manage, and share their health information with any provider, fostering a more collaborative and informed approach to their care. This change would empower patients by providing them with comprehensive and up-to-date information about their health, facilitating better communication with healthcare providers, and enabling more personalised and effective treatment plans. Additionally, it would reduce the administrative burden on providers, allowing them to focus more on patient care and engagement.

Alex: Thank you so much, Helen, for sharing such valuable insights with us.