Introduce everyone that is leading the session Introduce the session format – five minutes for each of us, we can take a couple of questions, then on to the round-table discussions. 10 minutes on each table, then change. New group at a table build on the discussion of the previous group, with the help of the chair at each table. Discussions will be reported back via the blog that has been set up. Time is tight for these sessions, so you can still contribute after the session at the blog too.
Service for supplying Human Tissue for medical researchers who need to test new treatments on human tissue, expediting UCL and trust management to make the process easier need patient and public pressure Link UCL with industry and other universities Concerned with Ethical Issues that leads into need for patient and public involvement
Two events. This is first patients and public influence research outcomes and to realise how important donation is Raise awareness amongst researchers, healthcare professionals in how important it is to link with each other, helped by TAPb. Data to influence policy makers, trust and UCL
Many public and patients few doctors and researchers
The audience were talked at
UCL and NHS are wary of anything perceived as bad publicity. Despite TAPb having positive outcomes. Patients sometimes voice piece of doctors opinion without the knowledge, patient group and association are more important People like to make a difference if they are given the chance……. Sometimes need to come to their own conclusion we need better engagement tools
Basically the same title! This was the theme of how it was organised They reluctantly allowed: Added voting systems to facilitate engagement Comment boards to draw out comments from people
We had related questions to gauge change in opinion shows need for More conferences,
Crucial to influence our research and policy makers: Patients and public less cautious than professionals Mutual benefit leads to representative audience Public and patient opinion is much more powerful than professional Data gives evidence of what policy is needed and how we are failing at engage, giving important information Representative audience takes time to build up, we started with what we knew and adapted each time This is a series of events, and each one builds on the other, now we have professional engagement, we can use that to focus on public/patient Next time the talks will be lead by patients with the odd research theme. Final point: public and patient are very different population and will need to be considered differently……. All with time
SCC 2012 Give me your brain: communicating tricky topics
Give me your brain: Communicating Tricky Topics Discussion points: •Tissue donation to medical research •‘Treatments’ that aren’t all they’re cracked up to be •Managing expectations – new drugs, patents and approvals •Open access by public – how do we keep on top of the information in the public sphere? Continue the conversation after the conference at communicatingtrickytopics.wordpress.com #SciCommConf
How do we talk to people about ‘dementia risk’?Jess Smith, Research Communications Officer
What does the evidence show?• Exercise is beneficial – can reduce the risk of developing dementia by 25-50%• High blood pressure is a risk factor – risk of dementia is 1.5 – 3 times higher.• High cholesterol is a risk factor – risk of dementia is 1.5 – 3 times higher.• Healthy diet and exercise are advocated as ways to reduce your risk. alzheimers.org.uk/research
People affected by dementia• Don’t assign ‘blame’• Focus on positive message – what can they do now?• Focus on positive (not genetics etc) alzheimers.org.uk/research
General public• Focus on prevention• Exercise, diet• Not anything specific – no ‘superfoods’ or crossword puzzles! alzheimers.org.uk/research
Press• Really clear• General messaging• No specifics• No superfoods or crossword puzzles!• Give quotable items – nice sounding messages. alzheimers.org.uk/research
Jo Brodie – Diabetes UK• Islet cell transplants in Type 1 diabetes.• background to Type 1 diabetes• What is islet cell transplant?• Is it a ‘miracle cure’?
Making a personal choiceKelly EdwardsResearch Information Co-ordinatorMotor Neurone Disease AssociationKelly.firstname.lastname@example.org
The role of patient organisations• Patient organisation role to provide the facts about unproven/off-label treatments• Allow people to make a well-informed personal choice
Eg: Off-label lithium and MND• Lithium is already prescribed as a mood- stabilising drug for mood-related disorders• Available off-label• Interest in lithium for MND from a patient’s perspective sky rocketed when a poorly designed trial published their ‘amazing’ results.
President of the Person with MND,royal college of who took lithium offphysicians label. "Thats easy to say"While the when youre not theinformation is one faced with theencouraging, its decision.”important to awaitresults of clinicaltrials because the Patient "Im willing to take themedicine has Organisations bridge chance if I understand theserious side-effects the gap betweenwhich could science and the risk.” people affected bypotentially make disease and thesome of thesymptoms worse." medical profession.
ALSUntangled• ALSUntangled use social networking to bring patients, clinicians, and scientists together for investigation of alternative or off-label MND Treatments.• 15 investigations completed, including X-Cell stem cell clinic, Bee Venom therapy and coconut oil.• Results are published in the journal ALS, are open access and are written in an accessible way.
Summary• Opinion on unproven treatments changes with perspective – this is important to bear in mind when tackling unproven or off-label treatment stories.• Patient organisations understand both why people would want to pursue these options, as well as why people should be careful.• As well as patient organisations, resources such as those created by ALSUntangled provide the sort of objective information that helps people to come to an informed choice on whether or not to pursue alternative approaches to treating their disease.
Donating your body to medical scienceFunded by UCL Public Engagement Dr Jenny Gimpel
Would you donate your body to medicine after your death? If so, how do you go about it? Why do medical schools need human bodies? What happens to the bodies during and after teaching? Join us for a public discussion onDonating your body to medical science 7.30pm Tuesday 20 April 2010 Bloomsbury Suite, Friends House, 173 Euston Road, London, NW1 2BJ Speakers include: Vishy Mahadevan, Royal College of Surgeons Wendy Birch, University College London Louise Evans, London Anatomy Office Shaun Griffin, Human Tissue Authority To register for a place, please contact Jenny Gimpel on tel: 07855 788985, email: email@example.com. The event is free, but places are on a first-come first-served basis. Refreshments will be provided. Doors open at 7pm. Nearest tube stations Euston and Euston Square. Wheelchair access, induction loops fitted.
Importance of consent and informing familyPossibility of rejection if donation unsuitable Bodies increasingly used in surgical training Military medics train on human cadavers
How many bodies are donated and are there enough? What do you do with the bodies?What if you have a donor card as well as a consent form?Is diabetes a criterion for rejection? Why don’t you take obese bodies to practice surgery on, given the current health problem?
Public – Rejection was biggest issue “Hate idea that after deciding to donate, might be refused.” “The subject needs more publicity.”Organisers – Want to do a larger-scale event
Initial reluctance within UCL No negative reaction from publicLess support from GP surgeries
Human Tissue Authority150 calls a monthDonor webpage in top 5 visited No national data on body donations!
Thanks toUniversity College LondonLondon Anatomy OfficeRoyal College of SurgeonsHuman Tissue Authority
Tissue Access for Patient Benefit (TAPb) Dr Amir Gander Department of Surgery Royal Free Hospital
Conclusions• Data is key• Crucial to influence our research and policy makers: • Patients and public less cautious than professionals • Mutual benefit leads to representative audience• We need to be more representative• Build momentum slowly