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General Discussion

Bear G

Patient involvement in the IMPACT initiative

Hi all
A couple of weeks ago @Charlotte Nurse Advisor , @Chris82 and I attended the first meeting of the IMPACT Initiative. This initiative is aiming to improve care of people with advanced bowel cancer. It was a great day with very interesting discussions. The audience was mainly oncologists and surgeons with some representation of charities and patients. The charity is working on being able to share the presentation I gave with you.

IMPACT stands for “Improving Management for Patients with Advanced Colorectal Tumours”.

The second meeting is taking place next month and they would like to encourage more patient and carer involvement – are you interested? They would like to get representation from across the country and will cover standard class train fare.

If you are interested then please email Abigail Vallance on avallance@rcseng.ac.uk

I’ve copied some information below.

I'll be there and I hope to see some of you there so our voices can be heard in helping ensure better studies designed for us.

This has been reviewed and approved by the Beating Bowel Cancer office.

Big hugs
Bear
Xx

INFORMATION ON THE IMPACT PATIENT AND PUBLIC INVOLVEMENT MEETING:

Date: 26th June 2017 11am to 4pm
Venue: Royal College of Surgeons, London

Patient and Public Involvement (PPI) is fundamentally important when designing and running research studies as patients bring valuable contributions by providing judgements based on their own experience and understanding of their condition. They may also have different thoughts and ideas about what is important in terms of measuring outcomes. Often, patients will also be able to predict whether a research study is likely to succeed by assessing whether the proposed research will seem acceptable to other patients. Any major research funder will now only consider awarding a grant to researchers who have involved patients in study design and planning.
If you are a patient that has had colorectal cancer that is advanced, widespread or has come back after previous treatment, or you are a relative or a carer to someone in this position, or if you work with a patient support group or charity, you can help guide the research team by advising us how best to carry out research for the benefit of future patients. It does not matter what type of treatment you or the person you care for has received. You will be able to draw on your own experiences to help the research team.

Ben81

Thanks for posting this @Bear G , I have emailed Abigail and will hopefully see you at the next meeting. :)

Bear G

Great news @Ben81 👌

Barbara

@Bear G @Ben81 I've just heard back from Abigail, inviting me to attend. Just need to move an oncology appointment - hope he thinks it's a valid reason!

Bear G

Fingers crossed @Barbara
:x::x:

CD1966

Thanks for posting this @Bear G - you and @Chris82 do so much amazing stuff!

LynneW

Thank you @Bear G, I have also emailed Abigail, I hope it will be possible for both my husband and me to attend the meeting. It should be extremely interesting.

Bridget55

Hi @Bear G I am interested but cannot make 26th June at this stage although this may change. Post op few days away planned after 2 month milestone. I would like to contribute to this. I'm sure there will be future meetings B :x:

Bridget55

Hi further to the above if there is pre work I can submit prior to the meeting I'm happy to do that. I will email Abigail. Email sent.

Bear G

Fingers crossed @LynneW 🤞
Shame you can't make it @Bridget55 butbthe days away sound like a great idea 👌
:x::x:

fnkyf8

would love to go @Bear G bit I've got work training that day. Please let us know of other dates as I would like to attend :x::x:

Bear G

Will do @fnkyf8 :x::x:

Bridget55
Quote from @Bear G:
Fingers crossed @LynneW 🤞
Shame you can't make it @Bridget55 butbthe days away sound like a great idea 👌

I've made contact with Abigail @Bear G. She is sending me some pre work so at least will be able to provide some input. its possible dates may chg re my plans. Cheers b

LynneW

HI @Bear G, we can go!!! I feel so excited, we have so much to say about Bowel Cancer Care especially in Wales. It will be very interesting to see how things differ in different parts of the UK. All I hope is that if Funding is past, my husbands appointments won't be on the same day!!!

Looking forward to putting faces to the names and emails, lol! :x::x::x:

Chris82

Looking forward to seeing some of you there!

Bear G

Great news @Bridget55 , @LynneW and @Chris82
:x::x:

Swan

Can't make the meeting but think it's great that we are going to get our voices heard. Good luck to all who can go and thank you @Bear for flagging it up.