Share4Rare toolkit for patient advocacy
Choose your messengers
If you are an avid advocate and want to spread your message to an even broader audience, or if you don’t like public speaking, you can gather people around you who are motivated to collaborate and help you spread your message. By having a clear goal, message, and tone of voice, you can delegate spokespeople and other influencers to effectively spread your message.
To pick the right messenger, you must be able to identify who the people are that your target audience admires, respects, or that they look up to in a different way. There is no need to ask a celebrity to endorse your advocacy: we often overlook the potential of an unknown spokesperson.
Choosing effective spokespeople
The person you choose to deliver your message is a key component of getting that message across. An effective spokesperson has good communication skills and can speak confidently to both groups of people and individuals. They should be able to deliver your message in a concise manner and make sure the central facts are preserved.
It is also important to make sure the message is being delivered in the right setting and to the right people. The phrase ‘read the room’ is good advice here, as your spokesperson will need to make a quick assessment of their audience each time they deliver the message.
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For example, if as a spokesperson you find yourself separately delivering a message to two competing bodies, you will need to be adapted to the audience in front of you each time. This will allow them to get the message across most effectively, gain your audience’s respect and avoid accidentally creating any misunderstandings or conflicts of opinion.
Preserve your sense of trustworthiness by keeping key facts in your delivery and avoiding assumptions or outcomes that are not yet 100 per cent certain.
Having your key messages in place will act as a guide to who should deliver the message depending on its complexity and who you wish to target it to. Your spokesperson should be picked according to your message rather than vice versa.
Expand your reach by checking which platforms your spokesperson is already active on and how these platforms interact with your target audience.
As mentioned, conflicts of interest represent a serious barrier to advocacy if there is no adequate protocol in place to deal with them from the outset. Ask your spokesperson to fill out a Declaration of Interest form to make clear their existing partnerships and reduce the chances of a conflict.
A spokesperson should have their finger on the pulse of your advocacy work - invite them along to meetings and conferences. This ensures that they stay up to date, since a message is always more convincing when the messenger knows the topic well rather than working with a superficial level of knowledge.
Communication with decision-makers
Direct communication with decision-makers can be a very strong advocacy tool and a great way to publicise your advocacy. Such communication can take place through letters, telephone calls, faxes, and emails, but the ideal way to contact an important decision-maker is through a face-to-face meeting. This might take a little longer to secure, but it’s worth the extra effort.
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Preparing some printed material which lays out your advocacy is a good idea as it will help you back up your key message and illustrate the ways in which the decision-maker could assist your work. It’s likely that they are pressed for time and this will give them more space to read the materials and understand your message at their own pace.
Keep your message clear in such materials without crowding too much information in. Using bullet points is a good way to summarise information, and illustrations also help since visual guides are often stronger and less time-consuming than reading through pages of information which you might know well but the recipient is trying to comprehend for the first time.
Before you talk with decision-makers, make sure you have your message, short- and long-term strategy clear (using tool Create Your Strategy) so that you can deliver it in the most efficient way possible. Be well prepared for your appointment and trim down your message using the Prepare your Pitch approach.
If you meet a decision-maker at an event and would like to leverage this meeting, mention it in your social media streams and tag them in posts. Where using photographs of your meeting, ask for permission beforehand to check if they wouldn’t mind you posting the picture.
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Ask when it would be okay to follow up on your meeting and the actions discussed. Whatever the reply, follow up by email soon after the meeting to thank the decision-maker for their time and remind them why their involvement is so meaningful to your advocacy.
Tone of voice
Using the correct language in all your dealings is very important. Patient advocacy is an important work which is at times also time-sensitive. This may generate a sense of racing against the clock while trying to get people inboard to make the changes you want.
Despite this, avoid language that is provocative, confrontational or inflammatory. Remaining balanced and calm, but also making your case by stating the facts, will allow you to remain credible and convince stakeholders who might be put off if they feel that they are being attacked.
Avoid vague language and the use of too many words where just a few will do. Your objective should be to get your message across as simply and as quickly as possible. If you can do this in five pages, don’t feel the need to spread it to 20.
Create a value document with adjectives that you can use to set the right tone of voice for your communications. Is it emotional, encouraging and friendly, or rather inspiring confident and empowering?