Partnership with Vertex Pharmaceuticals

Roedd y cais yn llwyddiannus.

Dear Royal Brompton and Harefield NHS Foundation Trust,

In reference to your ongoing project "Redesign and innovation in adult cystic fibrosis services: ‘Taking expertise to the patient’", please provide information on the details of the partnership with Vertex Pharmaceuticals (Europe) Ltd.

https://www.rbht.nhs.uk/sites/nhs/files/...

- What is the value, in cash and in-kind, of Vertex's contribution to RBHT?
- What are the terms and conditions of this contribution from Vertex Pharmaceuticals? and what is the outcome of your ethical review of those T&Cs?
- What data, patient or otherwise, is/will be shared with Vertex from this project?
- What, if any, is RBHT contribution to Vertex?
- Please provide all information given to patients, either when considering signing up to the project, or actively enrolled in the project.
- What disclosure do you make to patients, to inform them that it is a joint project with Vertex?

Yours faithfully,

Mr Burn

FOI, Royal Brompton and Harefield NHS Foundation Trust

Dear Mr Burn

Further to your request, made under the Freedom of Information Act, 2000. The Trust has received your request and will respond within 20 working days.

Your request has been allocated the reference number FOI5322 . If you have any queries in relation to your request, please quote this reference number.

Yours sincerely,

FOI Department
Royal Brompton and Harefield NHS Foundation Trust

If you are unhappy in any respect, with the way in which your request has been handled, you can request an internal review by writing, by email or letter, to The Trust Secretary, Royal Brompton & Harefield NHS Foundation Trust, Royal Brompton Hospital, Britten Wing, Sydney Street, London SW3 6NP: [email address] Tel: 020 7352 8121.

If you are dissatisfied with our response, you can apply to the Information Commissioner, who will consider whether the Trust has complied with its obligations under the Act, and can require the Trust to remedy any problems. You can find out more about how to do this, and about the Act in general, on the Information Commissioner’s website at:www.informationcommissioner.gov.uk. Complaints to the Information Commissioner should be sent to: FOI/EIR Complaints Resolution, Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.

It is important to the Trust that you are satisfied with the way in which your request was handled. There is an applicant satisfaction survey on our website and we would be grateful if you could spend a short time to comment on your request.
http://www.rbht.nhs.uk/about/freedom-of-...

dangos adrannau a ddyfynnir

FOI, Royal Brompton and Harefield NHS Foundation Trust

2 Atodiad

Dear Mr Burn

The Trust has now reviewed your request and can provide the following information (attached).

Your request has been allocated the reference number FOI5322 . If you have any queries in relation to your request, please quote this reference number.

Yours sincerely,

FOI Department
Royal Brompton and Harefield NHS Foundation Trust

If you are unhappy in any respect, with the way in which your request has been handled, you can request an internal review by writing, by email or letter, to The Trust Secretary, Royal Brompton & Harefield NHS Foundation Trust, Royal Brompton Hospital, Britten Wing, Sydney Street, London SW3 6NP: [email address] Tel: 020 7352 8121.

If you are dissatisfied with our response, you can apply to the Information Commissioner, who will consider whether the Trust has complied with its obligations under the Act, and can require the Trust to remedy any problems. You can find out more about how to do this, and about the Act in general, on the Information Commissioner’s website at:www.informationcommissioner.gov.uk. Complaints to the Information Commissioner should be sent to: FOI/EIR Complaints Resolution, Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.

It is important to the Trust that you are satisfied with the way in which your request was handled. There is an applicant satisfaction survey on our website and we would be grateful if you could spend a short time to comment on your request.
http://www.rbht.nhs.uk/about/freedom-of-...

dangos adrannau a ddyfynnir

Dear FOI,
Thank you for your partial response to my FOI request FOI5322.
Please address my following remarks :

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5 Please provide all information given to patients, either when considering signing up to the project, or actively enrolled in the project.
 The project is centred on the development of the adult CF service and is still at the pilot/testing stage, all information is openly shared via an Instagram account: cfinnovations.
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I've reviewed your Instagram account, which I assume you mean to be https://www.instagram.com/cfinnovations/

I find no actual information regarding the project in the 25 posts on that account. There is a single post stating 79 video calls and 357 lung function test have been completed.

I was requesting any and all information given to patients when they are considering or signing on to the project. Be that consent forms, information leaflets on data collection and data sharing, GDPR consent etc.

Even though you are in a pilot stage, some patients are taking part in this project already, what information has been given to them. And an Instagram account does not constitute information to patients.

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6 What disclosure do you make to patients, to inform them that it is a joint project with Vertex?

 This is stated in the Instagram account cfinnovations and an Executive Summary of the Joint Working partnership is openly available on the Trust website.
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I have reviewed your instagram account and find no mention of Vertex Pharmaceuticals in any of the 25 posts or account bio. Please provide either a URL to this information or screenshot of where this information appears on your Instagram account.

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 At the recent CF Trust conference (September 2018) the project was presented, the Joint Working contract with Vertex with included as a full disclosure. This presentation was live streamed online so that patients can access the lecture: www.cysticfibrosis.org.uk/the-work-we-do...
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There are 20 videos covering 7 hours and 23 minutes of presentations on that site. Please provide a URL of the video and timestamp to the point this statement is made.

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 The project is still in pilot phase and the final technology product has yet to be developed but once launched will include a full disclosure of our partnerships.
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You have stated that 79 video calls and 357 lung function test have already been completed, what disclosure was made to those patients of the details of data shared with Vertex?

Yours sincerely,

Mr Burn

FOI, Royal Brompton and Harefield NHS Foundation Trust

Dear Mr Burn

We will respond to your query as soon as possible.

Regards

FOI Department
Royal Brompton & Harefield NHS Foundation Trust

dangos adrannau a ddyfynnir

FOI, Royal Brompton and Harefield NHS Foundation Trust

1 Atodiad

Dear Mr Burn

Please see attached our response to your queries.

If you are not satisfied with this response, the staff would be happy to speak with you directly.

Regards

FOI Department
Royal Brompton & Harefield NHS Foundation Trust

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