Make a difference – driving change worldwide – increasing patient engagement

HAEi RPA Maria Ferron led this panel session, joined by Michelle Cooper from HAE Canada, Makiko Matsuyama from HAE Japan, Lisa Facciolla from the US HAEA, and Tiina Kortesmäki from HAE Finland. The topic for discussion was the complex issue of getting and maintaining patient engagement with advocacy activities.

Fostering patient connections is clearly top of mind for all Member Organization (MO) leaders, none more so than those at the HAEA. Lisa made clear that everyone in the HAEA takes building an HAE family very seriously. It means that HAEA delivers every interaction, every program, and every service with compassion, empathy, kindness, and welcome. The aim is to make sure everyone who interacts with HAEA feels heard and supported, as that is the foundation of engagement.

Michelle from HAE Canada remarked that she’d felt that energy at HAEA events. In Canada, their issues with patient engagement are sometimes more related to the country’s size and its small population, who often live in rural or remote areas. To make a connection, she outlined three key points to address:

• First, people have to be able to find them. Their website and social media are prime tools, but they also partner with specialist clinics that make many referrals to them.
• Secondly, building a relationship. Every new member is contacted personally by someone within the MO to build a relationship.
• Thirdly, connecting individuals. Regional patient meetings, newsletters, and attending HAEi conferences are all great ways to bring people together.

Thinking more about the global patient community, Michelle paid tribute to the work of HAEi, saying that HAE Canada would not be here without them. In particular, she paid tribute to Tony Castaldo for his support. Tiina echoed this sentiment and thanked Henrik and Jørn for their support on behalf of everyone in Finland. Their help and the support of HAEi meant it was possible to set up an organization in such a small country.

The evolving nature of patient engagement was the next element discussed. Lisa agreed that people’s needs are shifting. To stay on top of that, they regularly listen to the community to uncover gaps and what people want and need. One example was a discussion during a youth training event about what is missing. The response focused on technical language, medical terms, and their meanings. As a result, HAEA developed simple videos to explain the science of HAE to young people and their parents. Lisa told the audience that the project simply wouldn’t have happened if they weren’t listening to the community. In a later break, the audience was treated to a sneak preview of one of the videos, which introduced the cast of characters behind HAE and attacks. We’ll all find out more on hae day :-)!

Makiko from HAE Japan was keen to stress that changes to HAE management had affected people’s expectations and needs. What patients wanted ten years ago is not what they expect now, she said. It is especially the case in major cities and for HAE with C1 inhibitor deficiency (previously known as HAE type 1 and type 2), where doctors provide extensive knowledge and access to medication. However, for HAE with normal C1 inhibitor and in regional cities, knowledge is more limited. As a result, some of the MO’s activities are shifting to helping patients in rural areas access treatment. They are also keen to stress the benefits of attending events, as they offer the opportunity to participate in global conferences, which is a big draw for Japanese people.

Turning attention to building trust as a key component of engagement, Michelle shared US author Charles Feltman’s four elements of trust: Care, sincerity, reliability, and competence. She said that this guides HAE Canada in all aspects of its work. For Tiina from HAE Finland, trust is built through constant communication and being as accessible as possible. They have distributed guides to 68 hospitals across Finland and reached out to many newly diagnosed patients and their families, offering humanity and compassion when they are shy and afraid.

Bringing the session to a close, Lisa remarked on the fantastic value of the HAEi LEAP program, as this really provides a way to engage with young people and future advocates. Makiko suggested that, as it is not common in Japan for people to build communities like this, it is important to promote the value of connecting with others.