28 Feb 2023

Turning supporters into advocates on Rare Disease Day

Today is Rare Disease Day: a reflective, yet positive platform to raise awareness and drive change for the 300 million people worldwide living with a rare disease, their families and carers. But, with social and digital channels saturated with cause-promoting content and only half of intended audiences publicly advocating for campaigns (MHP / Savanta Network Effect Study 2022), this year, how can the rare disease community inspire people to act on a family of diseases that are poorly understood and that most will have no lived experience of?


What’s in a name?

The irony of the moniker, Rare Disease, to describe a collection of diseases affecting, statistically, 5 people in every rush hour underground carriage, is now well understood. By drawing on the collective impact of Rare Disease day, the awareness platform has supported the patient and clinical community by shining a light on a group of conditions that may fly under the radar.

However, research by MHP Group and our partners, the Behavioural Science consultancy, Influence at Work, shows that ‘Identity’ is one of the primary drivers of positive and public advocacy. A campaign’s ability to connect with people on a personal and individual level and for them to say ‘this reflects my values and who I am’, is a critical success factor in engagement. This might mean, for some, the brand ‘Rare Disease’ is one step removed from the specific condition they or their loved ones live with, masking a degree of the personal connection and lived experience. The balance between collective strength and individual impact is one to manage.

Identity was just one trigger identified in our research, which comprised of quantitative polling among 5309 members of the general public and 1701 people with long-term conditions, working with our partners, Savanta.

Triggers and barriers to campaign advocacy

Behavioural science tells us that as the world grows more polarised, we listen more to “people like us” and less to anyone else. More and more of what we see and hear is shaped by what people in our networks say and share. Moreover, ‘health’ does not operate in a vacuum. While people like us working in the industry consider the conditions we advocate for deserving of all necessary attention; in the real world, health is seen as a topic alongside other societal campaigns, including homelessness, climate change, gender- and race-based rights. This means, we have to work even harder to cut through, to effectively engage and make the change we are seeking.

The result is that advocates can inspire action faster and more effectively by engaging the people their audiences listen to, who will in turn then engage their own tribes. This is the domino effect we call The Network Effect.

Including identity, there are ten key factors recognised that determine whether someone is likely to advocate for a cause or campaign. These drivers and barriers provide insight on the messaging, content and campaign approach that might most effectively inspire people to take an action on rare diseases.

The five drivers of advocacy

  1. Loyalty – “This matters to me”. When audiences feel a personal loyalty to an issue or cause, they are likely to be motivated by messaging that focusses on the impact their action will have. For example, messaging like “Together, we can speed up diagnosis” or “With your help, we can find a cure”
  2. Connections – “I support the people behind this”. Including a personal appeal in your messaging is likely to help motivate someone to want to advance your cause. For example, “As the parent of a child with a rare disease…” or “As a doctor working in the field of rare diseases…”
  3. Obligation – “I owe them”. Celebrating your track record may help inspire action by creating a feeling of obligation to your cause or campaign. For example: “For 40 years, we have supported people living with rare diseases…”
  4. Reward – “It’s good for me to do this”. To generate a sense of reward for your advocates, paint them an emotional picture of the impact their support will have. For example, “You can give a child a future…”
  5. Identity – “This reflects who I am”. We know that people support campaigns that validate their identity and make them feel good about themselves. Demonstrating that other people them support you will reinforce their sense of self and also create a powerful social norm. For example, “Join the thousands of people who have signed our pledge…”

The five barriers to advocacy

  1. Intention – “I don’t care enough”. As many people will have no lived experience of rare diseases, it may be challenging to motivate them to act. This can be overcome by linking the campaign to something bigger or by making the issue more relatable. For example: “1 in 17 people have a rare disease” or “This is about more than just rare diseases, it’s about the future of the health system”
  2. Follow-through – “It’s a low priority”. If the issue does not feel urgent, potential supporters may not be included to take action. Making the action time-bound can help generate a sense of urgency. For example: “We are on the edge of a breakthrough…”
  3. Impact – “It won’t change anything”. Show your supporters how their action will help you achieve your goal. For example: “If we reach 100,000 signatures, we will…”
  4. Backlash – “People will judge me”. If stigma prevents people taking action to support a cause or campaign, consider creating content that will support them to have private conversations. For example, “Download our guide on talking your parents about rare diseases”
  5. Distrust – “I don’t trust them”. We know that industry is less trusted than the clinical or advocacy community, so collaborations can help build momentum behind industry-supported campaigns. For example, “We’ll teamed up with…”

As we reflect on this year’s Rare Disease Day, we can see just how far the cause has come in driving awareness and action for the millions of people who live with rare conditions worldwide. Like any health-related campaign however, the movement is up against fierce competition from other cause-related movements, all vying for attention, money and time. By pausing to consider the learnings from the Network Effect, the community – and its broader supporter base, including the Health team at MHP Group, can learn how to ensure continued success and impact for many more years to come.

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