Strengthening public and patient engagement in biobanking – developing plan of action – Cancer Biobank Conference in Cardiff

Strengthening public and patient engagement in biobanking – developing plan of action
Masonic Hall, Cardiff – Wednesday 18th June 2014

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Sadly due to problems on the M4 I missed the introduction to the day and part of the first speaker’s presentation.

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Dr Kirstin Goldring
UCL Biobank and NIHR BioResource Coordinator
Public perception of research – where are we starting from?

Kirstin presented some of the findings from recent research as below:

Findings:

  • Majority of respondents want to take part as long as the research has been approved by the research committee.
  • Involving patients in the group helps with research and information written in a way that can be understood by the non-medics. However our research showed that patient involvement in the research project didn’t make any difference to their involvement.

Findings: Eurobarometer

  • The term “Patient involvement” was not clearly understood either by patients or practitioners.
  • But once understood what it means both practitioners and patients appreciate the involvement of patients.
  • Communication was central to the better outcomes however practitioners are aware that they perhaps don’t have the time to do this well.
  • Patients need to feel empowered to ask questions and get more involved if they need to do so.
  • Practitioners worried about giving alternatives as it may dilute the patient’s focus.
  • Chronically ill patients tend to have more awareness of treatments and self-monitoring their wellness.
    Younger patients had higher expectation of their own involvement but were more reluctant to ask questions.

Findings: The Wellcome Study

  • Participants in research showed overwhelming support for the return of health related findings particularly when a condition is treatable and serious. Feedback throughout the process.
  • Respondents valued the role of a health professional or those they already had an existing relationship with during the process.

Findings: STRATUM

  • There is a high level of public support for biomedical research and willingness to donate NHS for this purpose.
  • More information and interaction they have with the process the more people are willing to be involved.
  • There was concern about where samples may be used. It was essential to provide good consent information.

Public Perception of Research

  • Public are interested but need more information, understanding and communication… Begin the conversation.
  • PPI needs to be considered before you start the process of putting a study together. Involve patients before the study is even designed.
  • Heading in the right direct but need to keep involving, developing and evolving.

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Amir Gander
Lead, Tissue Access for Patient Benefit

  • Falling between the cracks
  • Power of patient involvement
  • Linking across many hospitals over the north and east of London together with NHSBT transplant pathway.
  • Started out setting up and putting in questions about research and consent to all patient questionnaires. This evidenced that most people would give consent but those that didn’t had a doubt as to how their tissue was being used. Simply speaking they weren’t aware of the ethics and rules.

Amir was part of the team who set up a Big Bang Fair which is the largest celebration of science, technology, engineering and maths for young people aged 7-19 in the UK.

During the Fair they were able to speak with the young people about organ transplantation and donating tissue for research.  They also set up questionnaires before and after the process to gauge option on organ transplantation and tissue.  The kids were dressed up in lab coats and participated in many ways including an interactive iPad game and an anatomical model.

What’s next:

  • Going into schools
  • Organising events in neutral locations ie football, community centres etc
  • More Big Bang Festivals
  • Take this format around the country.

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Alison Parry-Jones
Manager of Wales Cancer Bank

Introduced the next section of the conference with a slide from NCRI.

How others raise awareness and increase understanding – case studies

  • Cancer Research Wales
  • Organ Donation Wales
  • Clinical Trials in Wales
  • GE Healthcare
  • How Tenovus use social media
  • Lay / Volunteer consenting for biobanking

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Liz Andrews
Director for Cancer Research Wales
Proud to support the Wales Cancer Bank

Totally dependent on the donations that are given by the public to Cancer Research Wales.

How do they generate and raise awareness that leads to donations:

  • press releases
  • radio adverts
  • social media
  • annual open day
  • newsletter monthly
  • website blogs
  • shops
  • community events

They’re also keen to say that all money raised will be used within Wales for research.

Every January they open the doors to our research labs so that the supporters can come in and meet the researchers and have a tour of the facilities.

Cancer Research Wales have a dedicated library for cancer. It is staffed by an excellent team who are able to research and provide specific information to medical professionals, charities and organisations thereby aiding the process.

Using the monthly newsletter to include a story about the research projects. A story on the researchers which includes details on the projects but also some detail about the researcher themselves. In addition to fundraising projects and fundraisers. The emails these generate from the public is very positive.
They track all the links on the newsletter so we can see how many people read which links. This helps them to know what is important to the public.

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Pat Vernon
Welsh Assembly Government
Organ Donation Wales

There is to be an Opt-Out system for organ donation in Wales.
How do we communicate the change to the public? It’s to be implemented in 01/12/2015.

Organ Donation – why we need to think about it?
The problems – societies’ view, myths and reality

Organ donation:
… is a final act of generosity
One person can save or transform up to 9 other lives by organ donation.
The most successful and cost effective treatment for many.

We have a chronic shortage of organs across the whole of the UK

People who could donate are not becoming actual donors

High rate of family refusal to consent to donation often because we do not know what our relative wants.

People are dying waiting for a transplant – 36 died in Wales in 2012/2013 waiting for organ donations.

What’s stopping us?

  • 9 out of 10 people support organ donation in principle
  • Around 60% never discuss it or get around to doing anything about it.
  • 1m on the Organ Donor Register in Wales but what about the other 2/3rds of the population
  • Reluctant to think about death
  • Faith and culture?

Get informed about organ donation:

  • Age is no barrier
  • Health conditions may NOT preclude organ donation
  • All the major faiths support organ donation
  • Organ donation is a very rare event, 30,000 people die each year in Wales but only around 250 in the way in which donation is possible.
  • Organ donation does not affect the quality of care you are given at the end of your life.

What’s being done in Wales:

  • Changing the law to a soft opt out version. This will happen until 1 December 2015.
  • Means you’ve consented to organ donation unless they’ve said otherwise.
  • Families will still be involved and be able to say if they know their relative didn’t want to donate.
  • Expected to deliver a 25-30 increase in the number of donations or 15 additional donors… which each one could save 9 people!

Awareness raising:

  • All the things above
  • But also the two year period until it is to become fully effective. They need to understand the choices and decisions. If you want to be a donor you can make an express decision to be a donor. Or do nothing and it will be deemed to having no objection to organ donation.
  • If you DON’T want to be donor you can register as that.

Encourage people to talk about organ donation. We know that most people don’t talk to their families about these things and it’s imperative that these conversations take place

The awareness and campaigning will need to continue so that new people to Wales understand their consenting and also so that people are reminded of how they can update their wishes.

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Barbara Moore
Communications and Engagement Manager
National Institute for Social Care and Health Research Clinical Research Centre

Clincial Trials in Wales

  • Cancer Research UK funded nurses and the research body at first. It’s now funded by the Welsh Govt.
  • NISCHR CRC have research nurses embedded within the NHS staff
  • Involving people through training and also payment.

Cancer Research UK do still fund some clinical research nurses at public promotional events in Wales.

Patient understanding of clinical trials is low. A campaign that was carried out is ‘It’s OK to ASK‘.

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Alyson Ayland
PR & Organisational Communications Specialist
GE Healthcare

GE provides tools and machinery to pharma but isn’t a pharmaceutical company.

5 step approach to engagement strategy:

Vision:

  • Be clear about your strategy. What outcome are you looking for? A little like a business strategy.
  • It takes time to build relationships and they develop over time with interaction.

Mapping:

  • Prioritise stakeholders
  • Focus internally and externally so that people understand what your strategy is.
  • Partner with other organisations
  • Programme of public speaking events. Prepare a speakers toolkit and ask your supporters to advocate/speak for you.

Media

  • Your people are your best advocates. Make sure they are all informed enough to talk about it.

Tactics:

  • Launch campaigns
  • Showcases
  • Strategic partnerships
  • Site visits from MEPs and people of influence
  • Guest speakers events
  • Photo opportunities and cross pollinating events
  • Newsletters (hard copy as it stays on desks longer)
  • Personal emails and letters
  • Networking events
  • Awards

Keep looking for conversations about what you can do

Milestones:

  • Keep projects energised.
  • Have events and remind people what you’re doing and why. Space them out so that they keep momentum but not too many.
  • Visit from health minister to show and tell about products and aspirations.
  • Signing of Memorandum of understanding with the local universities. Looking for synergies and collaborations.

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Will Barker
PR & Digital Officer
How Tenovus use social media

There’s a huge amount of people using social media however there’s also a lot of noise. We need to be heard above it.

Tenovus use Facebook, Twitter, Instagram, Youtube, Vine and LinkedIN

  • Want to tell stories of people we support. This increases awareness and also share the work that we do, research , support fundraising and awareness.
  • We want to be heard. A voice of professional opinion and comment.
  • We want to be the voice of cancer patients in Wales.
  • Talk to people that matter to Tenovus in the place that they’ve chosen. i.e. those who are on FB anyway will interact without having to change location
  • Not just broadcasting it’s about having a conversation.

Social media allows your organisation to get what it wants out of it. You can choose how to use it and how to interact.

Social media is a great way to drive people to our website where we can put much more information than we can on a post or tweet.

Must represent all people. Not just pink and female!

We use videos in blogs from researchers to show the ‘face of research’ to the public. A brief introduction but then if someone is interested, they can link through to more information available to them.

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Dr Balwir Matharoo-Ball
Operations Manager, Translational Research and Biobanking, Nottingham University Hospital
Lay volunteer consenting for biobanking

New biobank in Nottingham. Set up 3 years ago.

Patient Public Involvement in Consenting for Biobanking.  The use of language should also determine the level of the patient public part:

  • Participation – You take part
  • Engagement – You’re on the periphery
  • Involvement – From start to finish involvement

The public voice is really important to learn from and why all should listen.

Process of taking consent for inclusion in biobanking should be sensitive and involve the person and family

Asking for PPI involvement, NHSB produced a job application, training by the hospital trust, give them an honorary contract from the trust and also sign a confidentiality agreement.

As they are also facing the public they need to go through the necessary checks.
The PPI advocates are also taken through the whole process full life cycle of biobanking touring the histology labs and receiving an overview of the NHSB clinical/sample storage.
Annual appraisals for the PPI advocates.
Recognise and acknowledge the number of years given to the Nottingham Uni Hospitals by the PPI advocates.

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We broke for lunch during which time we were entertained by a wonderful group of singers from the Tenovus Choir.

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AFTERNOON SESSION

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Dr Bridget Wilkins
Experimental Cancer Medicine Centre Network / NCRI Pathology Networking and Biobank Lead
Swipe here to donate

Would a ‘swipe to donate’ card work for signing up for giving consent to use your tissue for research?

  • Same as a loyalty card, it might be presented to the person with instructions about how to active online. Once online the person is able to personalise the card, say what they would and would not consent to. Additional information about patient groups in the area, current research studies that are local.
  • Your consent would then be added to a database and the card would be the key. Information is updated if you had a hospital episode of someone has done.
  • You could incentivise someone by doing online research or updating it regularly.

Would need to be prompted to check in and update.. perhaps by email, text or on a letter.

You could also say how you wanted to be contacted i.e. by text/email/post. This communication could be used to send additional information or new trial information.

You could also keep it updated with other information such as recent blood tests.

Record mood, wellbeing, lifestyle information, weight/height etc. Enriches the dataset of your tissue which makes it of more use to the researchers.

A simple interactive tool to volunteer our use for leftover tissue samples.

Counter-argument against swipe cards

What happens if I lose the card? Can’t remember the pin number? Website.
I’m happy you can use my tissue, don’t bother me again.
Personal information about me, how will I know it’s secure? Where is it held?

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To close the day there was a round table breakout session to come up with action points and an implementation plan to raise understanding and awareness of research.

  • How do you get more public awareness into biobanking?
  • What is biobanking?
  • Would you attend an open day at a biobank?
  • How can biobanks or the CCB address challenges of public engagement in biobanking?

Discussing a number of challenges:
Appropriate communications, avoiding jargon, plain language.
Unfamiliarity about biobanking.

ST – Posters in waiting rooms in GP surgeries, A&E clinics etc
Start conversations about medical research and biobanking at different levels:
School, W1, community groups, Unis, Rotary, soap opera, magazines.
Divorcing fro own personal health but being part of everyday conversation.

ST – develop toolkits to give to resources so that these conversations can be had at appropriate level, professionals, patients, general public.

Trust – make this type of complex and emotionally laden topic accessible to all, accessibility = transparency = trust. Seeing is believing – tours of biobanks.

Looking at what we can do internally within biobanks.
Getting Biobanks managers and boards to understand the difference between involvement/engagement/consultation. Involving actively or engaging passively.
Sharing best practice with case studies from biobanks.
Research studies to demonstrate the impact that public and patient involvement can have on biobanking.
CCB could set up and provide a professional program to train biobanking managers on how to to do it, engage, involve. As part of CCB membership additional ‘kite mark’. Which will also build trust and transparency.

How can the CCB most effectively translate the findings of biobank into health development.
How do you engage Govt to develop a policy? Incentive?

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An incredible thought provoking day discussing biobanking, tissue and organ donation and also looking at the small amount of people who actually participate and discussing why.

I hope the notes from the above may get you asking questions, perhaps signing up but more than anything having a conversation about it all and letting your friends and family know your wishes.

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