Give me your brain: Communicating Tricky Topics

Continue the conversation after the conference at communicatingtrickytopics.wordpress.com

#SciCommConf

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?

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 choice

Kelly Edwards

Research Information Co-ordinator

Motor Neurone Disease Association

Kelly.edwards@mndassociation.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.

Person with MND, who took lithium off label.

"That's easy to say when you're not the one faced with the decision.”

"I'm willing to take the chance if I understand the science and the risk.”

President of the royal college of physicians

"While the information is encouraging, it's important to await results of clinical trials because the medicine has serious side-effects which could potentially make some of the symptoms worse."

Patient Organisations bridge the gap between people affected by disease and the 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 science

Funded by UCL Public EngagementDr 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 on

Donating 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: jennygimpel@gmail.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 family

Possibility 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 public

Less support from GP surgeries

Human Tissue Authority150 calls a monthDonor webpage in top 5 visited

No national data on body donations!

Thanks to

University College London

London Anatomy Office

Royal College of Surgeons

Human Tissue Authority

Tissue Access for Patient Benefit (TAPb)

Dr Amir GanderDepartment of Surgery

Royal Free Hospital

TAPB

What we wanted

• Public and patients involved with research

• Raise awareness

• Data from patient/public vs. professional

Improving Liver Transplant Outcomes, Your View

• We wanted:

Clinical professionals/researchers

What we got….

Patients/public

Clinical professionals/researchers

What we learnt• Inflexibility

• Patients invited by doctor = doctor

• People want to make a difference

• Similar title!!

• Voting system

• Comment boards

After this conference are you more or less

likely to donate tissue?

1 2 3

88%

8%4%

Yes

No Need more information

We have data!

Patients running away!Patients running away!

1 2 3 4 5 6 7 8 9 10

21%

3%

0%

9%

6%

41%

18%

0%

3%

0%

1 2 3 4 5 6 7 8 9 10

12%

0% 0%

12%

0%

47%

24%

0%

6%

0%

Patient Professionals ProfessionalsPatient

• 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

Conclusions