Communications

It is helpful for PSPs to create a communications plan that will be used throughout the process and particularly at the launch of the PSP, launch of the surveys and announcement of results.  This helps to make the best use of websites, social media, videos, press releases, events and presentations.  It could include a list of organisations and individuals to be contacted, the names of the Steering Group members responsible for contacting them, and draft text to be used either in emails, social media, presentations or newsletters.  The following are examples of communications or promotional plans: Detecting Cancer Early PSP, Diabetes and Pregnancy PSP, Occupational Therapy PSP and the Dementia PSP.  

It is worth considering whether there is an experienced communications person, either within the organisation leading the PSP or in an organisation represented on the Steering Group, who can offer some advice on how best to communicate the PSP activity, as effective communication is an important part of the success of a PSP.

Other considerations when planning and executing PSP communications activities may include:

  • Defining the PSP image, including title, logo and hashtags
  • Developing and maintaining a PSP website
  • Developing promotional videos and multimedia material
  • Devising and coordinating photo opportunities
  • Sourcing and supporting events including conferences, open days, charity events
  • Identifying opportunities to blog or contribute to newsletters
  • Drafting media releases and case studies
  • Developing accessible and easy-read materials.

It is likely that the Steering Group will be able to identify these opportunities and members would normally work with the PSP Lead and Coordinator to deliver them. The Epilepsy (Canada) PSP used a Google document, shared amongst the Steering Group, to agree names and organisations that should be told about the PSP, who from the Steering Group would contact them, and then track what the response and outcome was.

The JLA website contains links to individual PSP websites.  Individual PSP websites range in size from a standalone site to a page or section on an existing website belonging to a charity or group involved in the PSP.  The PSP website will usually host a description of the project, a description of the Steering Group and supporters, a link to the survey, relevant updates and documents, and contacts.  It is a place where results can be announced and stored and future updates of what has happened to the priorities can be published.  Many PSPs choose to develop their own logo.

As well as a website, examples of other communications that PSPs have undertaken to keep people involved and informed at every stage of the process are:

The Pediatric Cancer (Canada) PSP wrote about their experience of researching the best ways to use social media to boost responses to their survey.

We encourage the use of the JLA brand in PSP communications.

Information about the PSP should be relevant and accessible, written in plain English and suitable for anyone without medical or technical knowledge.  Materials should be produced and distributed in formats that are accessible and appropriate to the audiences that a PSP wishes to engage with.

It is important that the Steering Group retains the interest and engagement of the wider community throughout the process.  This is especially important during the stages when input from the community is not actively required, for example emailing them or using social media to let them know what is happening when the survey data is being analysed and checked against the evidence base.

Partners in the PSP should be reminded that they are playing key roles in ensuring patients’, carers’ and clinicians’ concerns become integrated into the research agenda.  This will encourage them to continue to be actively engaged in the process.  This is important for priority setting but also at the next stage: raising research funders’ awareness of the outcomes of the PSP’s work.