The symptoms of MS can often be ‘invisible’ to others. This can be extremely frustrating and exhausting for those affected. To show the impact that access delays to treatment can have on patients, and spur them into action, an impactful idea was required.

An empty shop on a busy street in Dublin was transformed into The MSunderstood Café and all materials, furniture and visuals were distorted so that customers’ sensation of touch and their vision were affected, mimicking symptoms of MS. Customers visiting the Café had no idea that they were part of an experiment. Actors staffed the Café and made sure each customer experienced the various interactions, and their reactions were captured on hidden cameras.

Implementation

• Research results shaped the messaging in the communications materials

• Focus group was held with people with MS to ensure the Café interactions were true to life

• This feedback guided the creation of the Café furnishings and materials

• Politicians, Government representatives, policy and healthcare stakeholders, media and influencers were invited to visit the Café

• Shopfront signage highlighted coffee cost €1 all day, with all proceeds for charity

• Footage of customers’ reactions was edited into a short video, showcasing the challenging environment encountered

• Press materials issued to media with campaign key messages and call to action

• Patient case study interviews gave personal perspective

• Social media strategy amplified reach and engagement

Timeline:

01.11.17 to 20.04.18

Scale:

Over 2,000 people visited the pop-up Café and the campaign had a reach of over 13 million, in a country of 2 million adults.

Media Outputs

• On launch day Ireland’s largest national daily newspaper led with a political-focused headline: ‘Health Minister under pressure to give green light to allow MS sufferers access to promising drug’

• Widespread coverage was secured across national and regional print, broadcast and online media, covering the key messages and call to action

• Patient case study interviews were secured and ensured a personal perspective on living with MS was incorporated into media coverage

• The MSunderstood Café video was viewed and shared via PatientsDeserveBetter.ie, MS Ireland’s social platforms, media and social outlets

• The campaign had a reach of over 13 million, through traditional and social media, in a country of 2 million adults

Target Audience Outcomes

• Visitors to PatientsDeserveBetter.ie contacted their local politicians which led to 12 parliamentary questions about improving access to MS treatment in one month

• Two Ministers have formally written to the Minister for Health requesting a change in the flawed market access system, based on requests from their constituents

• Commitments from all politicians who visited the Café from various political parties

• Minister for Health agreed to meet with MS Ireland to discuss access

Consumer awareness

• Feedback from customers confirmed it resonated strongly and understanding of MS increased

• Social media conversations reflected the need for change and the positive reaction from People with MS and all those who visited the Café

• Successfully announced Roche as a leader in neurology in Ireland and its commitment to supporting patients

The MSunderstood Café gave customers a taste of the daily challenges faced by people living with multiple sclerosis (MS). It was co-created with people with MS and MS Ireland (national patient organisation) in partnership with Roche, with the aim of raising awareness and understanding of MS, and to open a dialogue with policy makers about the need for improved access to medicine in Ireland. A creative, authentic and impactful campaign was implemented, utilising media relations, public affairs, stakeholder engagement, content production and social media activities to spur the public into action and demand speedier access to life-changing medicines.

Target audience:

• Government officials, policy representatives including the Minister for Health; Parliamentarians from each political party; the Health Service Executive (HSE).

• People with MS and their families

• Those affected by access delays and their wider networks

Target media:

• National/regional print, broadcast and online media, medical trade and political publications

PR planning/approach:

• Partnered with MS Ireland and engaged its community networks

• Research to gauge the public’s understanding of access to medicines

• Engaged with political and policy stakeholders to increase awareness of the Café

• Media relations and social strategy amplified the ‘noise’ and awareness

• Secured highly visible location to ensure high footfall

• Agreed most impactful interactions to mimic MS for Café production

• Website created as information resource and tool for constituents to contact their political representative

• Paid social promotion to raise awareness of Café, video and drive traffic to website

Situation:

In 2017, Ireland had the worst access to new and innovative medicines n Western Europe due to delays in the Irish health system. MS is the most common neurological disease of young adults in Ireland affecting the motor, sensory and cognitive functioning of the body. Due to access delays, people with MS in Ireland are waiting for life-changing medicines that people in other European countries can already access.

Brief:

Address access challenge by galvanizing the public and political stakeholders to demand speedier access to medicines and increase awareness of MS.

Objectives

• Ensure the Irish public understands the critical and immediate need for improved access to new medicines

• Propel access to the top of the political agenda by encouraging the public to demand change via PatientsDeserveBetter.ie

• Empower patients to be part of the conversation

• Raise awareness and understanding of MS in an impactful and meaningful way