Active engagement happens when everyone is working towards the same shared goal and is given every encouragement to participate. The first stage of using co-design tools involves explaining what it is hoped can be achieved and how the process will work. The way they are used needs to reinforce the equal value placed on contributions from consumers and health professionals alike.

Establishing and sustaining good communication is a vital part of making Co-Design work. Strong communication platforms create a mechanism for ongoing dialogue between consumers, carers and health professionals, and a framework for engagement, interaction and sharing of ideas.

Effective communication platforms can:

  • Create a sense of community;
  • Sustain connections in meaningful ways in between face-to-face meetings;
  • Set the tone for relationships between professionals, consumers or carers;
  • Reinforce consumers’ or carers’ active role in shaping the services provided to them;
  • Create flexibility and multiple options for new ways of working together.

Communications channels can be formal or informal and contribute to the Co-Design process in different ways. Active relationships might be established, for example, across websites and newsletters, while consumers or carers are asked to participate in surveys or research delivered via email.

Different mediums provide different types of communication platforms, and technologies are ever evolving. The choice and use of different communication channels should be driven by what consumers want and need. What do they want to know? What style of communication will be most useful, appealing and convenient?

Creating a Multi-Faceted Communication Platform

For any communication channel to work effectively as a Co-Design tool it must support ongoing dialogue between consumers, carers and health professionals. These channels must be set up properly and may require ongoing maintenance. Resources and responsibility must be allocated to ensure that communication is sustained, and that enquiries do not go unanswered.

Over twenty years, the Angelman Syndrome Association and the Angelman Syndrome Clinic have developed effective two-way communications channels that have been essential to their collaboration.

Importantly, the responsibility for maintaining and managing these channels has rested entirely with the ASA. This means that AS families have determined the form and style of communications that are of most value to them. The willingness of the ASC to engage with their client group on their terms, and with utmost respect for their control of the process, was paramount to maintaining a positive relationship between families and clinicians.

A number of two-way communications channels are actively utilised by the Angelman Syndrome Association and the Angelman Syndrome Clinic. Key examples are:

Dedicated clinic email address

A dedicated clinic email address was established in direct response to families wanting a point of contact with the ASC that did not involve having to attend a clinic appointment. In this way, they can ask for advice as the need arises, whether about a specific matter or general enquiry. Responses are returned by the clinic’s paediatricians or by the clinic’s carer advocate, who has personal experience of caring for a child with Angelman Syndrome. Clinicians are committed to providing a response to queries within two days. The email address is promoted via the ASA website, in their newsletters and in the ASA brochure.

Angelman Syndrome Association email distribution list

Email contact between the ASC and Angelman families is maintained using an email distribution list, held and managed by the ASA. This has allowed communications from professionals to be validated and endorsed by members of the ASA committee prior to distribution. It has been used to gather opinions ahead of focus groups and conferences to determine issues of primary interest for discussion, and to invite feedback thereafter. Contact with families comes from the ASA so that their ownership and active involvement in the process is apparent.

Angelman Syndrome Association website

The ASA website is a vehicle for sharing information and putting families in contact with each other. It is a rich source of information about all aspects of Angelman Syndrome and has supported many families in establishing a diagnosis for their child. A web search for key symptoms quickly brings parents to the site and encourages them to seek a medical opinion. Once diagnosed, it introduces families to the Angleman community in Australia and to the various support services available via the ASA and ASC. The Angelman Syndrome Clinic does not have a website of its own but rather a page within the ASA website describing its services and contact details. The AS Forum and the Angelman Chat Room are open to family members, teachers, students and professionals, but registration is required so that contributions can be monitored and moderated. The ASA website forum and chat room are excellent examples of Co-Design tools in action: they provide an invaluable resource for parents and also guide ASC clinicians about emerging needs, challenges and trends within the group.

Explore the ASA website at www.angelmansyndrome.org.

Angelman Syndrome Association newsletters

Newsletters are sent quarterly to all members of the ASA (either by post or email). They are colourful, informative and personable. Notices, information and reports are supported by links to websites. The ASC provides a column from the clinic coordinator in every newsletter titled ‘Clinic Chat.’ This column was requested by families who wanted to be kept informed about the clinic and relevant research updates. This column is written in a friendly, informal tone and a photo is included, putting a face to the name behind the dedicated clinic email address. The column provides relevant, useful information to families and has been used to invite them to participate in research. It also creates a sense of the connection between the ASA and the ASC, illustrating their ongoing productive partnership.

Examples of these newsletters are available from the ASA website.