Developing your online communications workshop

Our first workshop of 2018 took place on Wednesday 28th March and focused on how patient groups can develop their online communications.

Good online communications are very important when it comes to rare disease patient groups. Being online gives newly diagnosed patients a way to find you and benefit from the services, information and support you offer. It can also allow you to build a community of patients, who might otherwise struggle to meet in-person due to disability or geographical distance, and to professionalise your organisation, which is crucial for fundraising.

With this in mind, Findacure’s first workshop of 2018 focussed on some key areas rare disease patient groups might struggle with when it comes to online communications. The workshop was held on Wednesday 28th March in London. This page gives a summary of the excellent talks given by our speakers, and links to recordings of their presentations if you are interested in finding out more.

Libbie Read - Projects and Communications Officer, Findacure

First up was Findacure’s very own Libbie Read, who gave an overview of the communication tools patient groups can use to achieve their online goals, as well as some tips for using them. Starting with social media, she introduced the audience and purposes of Facebook, Twitter and Instagram, as well as the disadvantages of using these platforms. She also shared tools you can use to get to know your own social media audiences, such as the analytical tool Followerwonk (free for Twitter), and ways to schedule posts and streamline external content, such as Hootsuite (free for limited use).

Moving onto websites, Libbie mentioned some platforms patient groups can use to cheaply and easily create a new site, such as the visual builder Wix (free for limited use), as well as analysing the use of your website through Google Analytics to ensure search engine optimisation (SEO). She finished up with e-newsletters, introducing Mailchimp as Findacure’s favourite tool for delivering content straight into subscribers’ inboxes.

 

Andy Milligan - Co-Founder, The Caffeine Partnership, and Trustee, Findacure

Next to the screen was Andy Milligan, who stressed the importance of going back to your purpose (why you exist as an organisation) when you communicate, particularly when it’s for fundraising. By making your purpose as powerful and ambitious as you can (even to the point where it borders on the impossible), and then using it as part of your messaging (such as in your strapline), you will give yourselves, your staff, your volunteers and your donors a sense of ongoing mission. It gives them something to contribute to, a change they can help to make happen, and a sense of their own purpose.

To give some examples, rather than saying you are researching a disease, you can say that you want to eradicate the disease or end the fight against that disease. Rather than saying you help patients, you can say that you want to transform the lives of patients, or that everyone deserves to live a pain-free life. This emotive language grabs both the head and heart, and because ‘eradicating’, ‘ending’ and ‘transforming’ are very hard to achieve, it gives the sense of ongoing mission that will engage people in your brand.

Andy also introduced his golden rule: you should focus on the most powerful thing you do. What are you best able to talk about, what do you love doing, and what will people most likely give money for? The one thing you do that best meets these three questions should be the focus of your messaging, and then the organisation will grow as a whole.

Nicola Miller - Co-Founder, Teddington Trust, and Co-Founder, Rare Revolution Magazine

When it comes to managing online communities of patients, Nicola Miller has a wealth of experience to learn from. Nicola runs two online communities: the first for the Teddington Trust, a patient group for patients and families living with xeroderma pigmentosum, and the second called Rare Revolutionaries, a community for all rare disease patients regardless of their condition.

Nicola talked us through some key things to think about when you’re setting up an online community for patients. The first is why? What value will a community bring, what gap is it filling, will it add anything new? There’s no point doing it for the sake of doing it or to replicate an existing forum. The second is who? Which part of your community do you want to reach? Will you allow scientists and researchers in, or keep it to patients and families? And the third is where? Which platform will you use to host your forum? How easy is it for people to access and use this forum?

Nicola stressed that you cannot underestimate the time it takes to nurture and maintain a vibrant and relevant community, and that moderation is key. You have to make sure your community is true to its purpose and it doesn’t let people who aren’t supposed to be in the community slip through, as you will break the trust of existing members. She also stressed that you don’t own the group, but that you must take really seriously the responsibility to look after the people in the group and protect the information they share.

 

Susan Passmore - Chief Executive, Prader-Willi Syndrome Association UK

First up was Findacure’s very own Libbie Read, who gave an overview of the communication tools patient groups can use to achieve their online goals, as well as some tips for using them. Starting with social media, she introduced the audience and purposes of Facebook, Twitter and Instagram, as well as the disadvantages of using these platforms. She also shared tools you can use to get to know your own social media audiences, such as the analytical tool Followerwonk (free for Twitter), and ways to schedule posts and streamline external content, such as Hootsuite (free for limited use).

Moving onto websites, Libbie mentioned some platforms patient groups can use to cheaply and easily create a new site, such as the visual builder Wix (free for limited use), as well as analysing the use of your website through Google Analytics to ensure search engine optimisation (SEO). She finished up with e-newsletters, introducing Mailchimp as Findacure’s favourite tool for delivering content straight into subscribers’ inboxes.