Communicating and managing relationships with the public and patients

DCU PPI Ignite – PPI in Research

Dr. Laura Brady, Head of Research at Fighting Blindness

Our Vision

Our vision is to cure blindness;

to support people living with sight loss;

and to empower patients.

Public and Patient Partners

Patient Involvement results in greater impactful and more relevant R&D

Example 1: Consider the Needs

https://www.nala.ie/literacy/current-nala-research/health-literacy.

Example 2: Language Matters

Rephrase Questions:a. I have poor central visionb. I have poor peripheral visionc. I have poor central and peripheral

visiond. I have night blindness

Use simple language

Example 2: Language Matters

Example 3: Make it accessible

• Consider the needs of your audience

• Have an elevator pitch ready

• Explain succinctly and simply

• Demonstrate the relevance of your research

• Relate the research by using analogies, metaphors and continuous comparisons

• Summarise with a take home message

Example 4: Relate your Research

vs

“I personally found the main research presentations really valuable. Thank you for this hopeful information.”

- Retina 2018 Public Engagement Day attendee

“The presentations were very clear, interesting and informative.”

- Retina 2018 Public Engagement Day attendee

“The whole idea of connecting a researcher and a patient mentor in this way is a brilliant initiative and a great opportunity for both people to learn to work as an effective partnership. I found it very worthwhile” - Patient Representative

“I learned so much from this activity. It is funny to look back and think that I submitted this as a lay abstract” - Researcher, UCD

Example 5: Avoid Scientific Jargon

Useful Resource:http://www.hemingwayapp.com/

Example 6: Respect your Partners

Example 7: Consider your Method

Where to start?

Get In Touch

W: www.FightingBlindness.ie

E: laura.brady@fightingblindness.ie

Facebook.com/Fighting.Blindness.Ireland

@fight_blindness

instagram.com/fightingblindness