PatientsPromoting patient advocacy and nurturing patient-centric care: Interview with Kyowa Kirin North America

Kyowa Kirin’s 2030 vision is rooted in being a more patient-centric company – where employees are encouraged to constantly consider what impact they, or their decisions can have, on patients. Patient advocacy activities create a direct channel for engaging with patient communities and gaining patient insights. These concepts are not well known in Japan, so we discussed specific examples of patient advocacy, and their significance, in North America.

Interviewee

Lauren Walrath, MBA
Vice President, Public Affairs, Kyowa Kirin North America (hereafter referred to as KKNA)

After launching new products and digital services for Fortune 200 companies, Lauren channeled her passion for biopharma corporate communications and advocacy into senior roles at several US healthcare companies before joining KKNA in 2019.

KKNA divides its patient advocacy team in two parts – with one part driving engagements with organizations related to therapeutic areas in which we have marketed medicines; they tend to focus on disease education and improving patient care. The other part works with our clinical development teams to engage with research-focused advocacy groups with the aim to ensure trials and new medicine research are done in a patient-centric way.

To promote that engagement, we strive to understand the focus and goals of different advocacy organizations, create opportunities for dialogue and interaction, and determine how we can help further their cause to help benefit patients. Most advocacy groups are small non-profit organizations with limited resources, so we are always respectful of their time and interests because their first priority is to serve patients and their families. I would say that advocacy is all about finding the right way to work together. If you team up and find other likeminded individuals and common causes, advocacy will work well. Advocacy is all about speaking up for actual patient needs. When we’re effective, we open up more channels for communication through social media campaigns, digital posts, events and roundtable discussions to reach patients. Sometimes, we bring more voices and partners together to collaborate on surveys, information and data sharing in order to deliver greater value to the community and fulfil unmet patient needs.

We also participated in Rare Disease Day to help employees better empathize with patients (see Celebrating another year of diverse initiatives around the world: RDD 2022 in North America).

Elsewhere, we felt there was a unique opportunity to really strengthen the focus on caregiving for patients with Parkinson’s disease, which impacts patient movement and neurological capabilities over time. We teamed up with two major advocacy groups, the Parkinson’s and Movement Disorder Alliance (PMDA) and the Davis Phinney Foundation, to conduct surveys in 2020 and 2022 of 700 and 750 care partners respectively. Those surveys have been central to subsequent work by these groups and others to improve the range of educational and support programs for the care partners of patients with Parkinson’s disease.

This year, we convened a roundtable with advocates, patients and care partners to discuss how we could assist patients with the pain points and difficulties revealed by the survey. We are publishing the insights from that discussion as a white paper with the advocacy organizations. The advocates suggest care partners don’t always know at the beginning what their journey is going to look like so sharing tips and practices from other care partners will help them feel more able to face some of the changes that happen as a result of the disease.

These are just a few examples, but we are always respectfully exploring new opportunities to work with advocacy groups to highlight gaps, fulfill patient needs, and create stronger support systems.

As a global team between North America and Japan, we are progressing our internal dialogue to help leaders and colleagues recognize differences in our healthcare systems and determine how we, together with advocacy groups, can operate in those respective systems to provide patient-centric support. While we are all inspired by the same mission to help patients, how we go about that can be quite different given the different numbers and sizes of advocacy groups. Regulations for patients also vary by region. One common theme however is that none of us can do everything ourselves, so partnering with advocacy organizations is key.

Senior management at Kyowa Kirin in Japan champion the idea of “kabegoe,” or overcoming difficult challenges, and focusing on the very long-term goal. Some issues, such as African American disparities, are rooted in long-term issues in the US healthcare system. They are big problems. With advocacy – we speak up and bring attention to the need for change. Through our work and collaborations with advocacy organizations, we are determined to improve the journey for patients with a condition.

The activities mentioned in the article were conducted in the North American Region under the relevant laws and regulations of each country. Kyowa Kirin also conducts the PA activities under the relevant laws and regulations in Japan.