1. WHAT IS RESEARCH? Catey Bunce Principal Statistician NIHR Biomedical Research Centre (BRC) at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology; London School of Hygiene & Tropical Medicine Richard Cable PPI & PPE Research Assistant NIHR Moorfields BRC NIHR Moorfields BRC Low Vision Day, 7 th June 2014

2. What is research? How medical research used to be conducted. How medical research is conducted today. How you might get involved. WHAT IS RESEARCH? NIHR Moorfields BRC Low Vision Day, 7 th June 2014

3. Medical research is designed to provide information about health or disease. Its purpose is to learn how bodies work, how people get sick, what can be done to prevent disease, how best to treat disease, how best to help patients with disease. Each study will try to address a specific question. No one study can answer everything. There are many different types of research. WHAT IS RESEARCH? NIHR Moorfields BRC Low Vision Day, 7 th June 2014

4. Interventional studies : Clinical trials test whether particular medicines or treatments are safe and how well they work. We need to know does a new treatment work, does it work better than other treatments, does it have side effects. Does one sort of low vision help yield better outcomes than a different sort of low vision help. TYPES OF RESEARCH NIHR Moorfields BRC Low Vision Day, 7 th June 2014

5. Observational studies : Here we may simply collect detailed information on patients with a particular eye condition to get a better understanding of that condition to give clues as to how different treatments might work. We may compare factors between people with conditions or indeed between patients with a particular condition and those without to see if we can identify why the people develop the conditions. TYPES OF RESEARCH NIHR Moorfields BRC Low Vision Day, 7 th June 2014

6. Qualitative studies : This may simply involve a group of patients or their family and their friends talking to researchers so that researchers better understand the condition from the person’s perspective. Sometimes it is only by talking to you that we discover a symptom no-one has previously thought about. TYPES OF RESEARCH NIHR Moorfields BRC Low Vision Day, 7 th June 2014

7. Largely consisted of medics conducting research on patients Sometimes a statistician was involved Sometimes other healthcare professionals were involved NEVER direct patient involvement HOW MEDICAL RESEARCH USED TO BE CONDUCTED NIHR Moorfields BRC Low Vision Day, 7 th June 2014

8. Medical research today should be conducted by research communities, comprising healthcare professionals, appropriately trained researchers, patients, relatives and the public. All play an essential role in ensuring that research is relevant, of value, is meaningful and has impact. HOW MEDICAL RESEARCH SHOULD BE CONDUCTED TODAY NIHR Moorfields BRC Low Vision Day, 7 th June 2014

9. Helping to identify research that is important and relevant. Helping to choose important topics for research. Helping to develop patient information leaflets and checking that what doctors have written makes sense to you and your family Helping to support a research project Helping to promote research Helping to disseminate research findings HOW MIGHT YOU GET INVOLVED? NIHR Moorfields BRC Low Vision Day, 7 th June 2014

10. Join our research community by completing our research hand-out. Help design a new randomised controlled clinical trial looking at different types of low vision support by completing a short questionnaire which we will hand out now. HOW MIGHT YOU GET INVOLVED? NIHR Moorfields BRC Low Vision Day, 7 th June 2014

11. HELP OUR RESEARCH TODAY! NIHR Moorfields BRC Low Vision Day, 7 th June 2014 1. Where would you like your low vision assessment visit to take place? At my eye hospital At my local optometrists At my GP surgery Somewhere else 2. What services would you wish to receive? Please rank in order of importance to you (from 1 to 9 where 1 is most important and 9 is least important). ______New glasses ______Provided with low vision devices such as magnifiers

12. HELP OUR RESEARCH TODAY! NIHR Moorfields BRC Low Vision Day, 7 th June 2014 3. How long would you expect a low vision assessment visit to be? ______ Minutes 4. How long would you be prepared to spend on a visit? ______ Minutes

13. HELP OUR RESEARCH TODAY! NIHR Moorfields BRC Low Vision Day, 7 th June 2014 5. Would your preference be a single long visit or multiple shorter visits? Single long visit Multiple shorter visits 6. Are there any additional services you would like or comments you would like to make?

14. Thank you for listening! & Thank you for taking part! WHAT IS RESEARCH ? NIHR Moorfields BRC Low Vision Day, 7 th June 2014