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Patient Organisation Declarations

Patient Organisation Declarations

For all disclosures of our support for Patient Advocacy Groups and Organisations after July 2017, please click this link.

 

Name of the Patient Organisation Website Amount Date of Contract
Anthony Nolan www.anthonynolan.org Travel cost: £867.50
Installation cost: £6,500.00 (£500.00 per name)
August, 2017

Description: Janssen partnered with Anthony Nolan to bring to life the ‘Make Blood Cancer Visible’ (MBCV) 2017 disease awareness campaign. The aim of the campaign was to increase public awareness and education during the month of September 2017, so that we can together change the lack of insight and understanding around blood cancers amongst the UK public. The campaign focussed around an art installation, designed and created by Paul Cocksedge Studio. The installation represented the 104 individuals that are diagnosed with blood cancer every day, raising awareness and bringing to life their experiences through their own stories. The installation was located in Paternoster Square, London and was available to view from the 4th-30th September 2017.

No fee was paid to Anthony Nolan to partner with Janssen on the MBCV campaign. Janssen have paid the cost of travel for six Anthony Nolan participants, whose names were included in the installation to travel to London for the installation opening on Monday 4th September 2017. The total cost of this travel is £867.50. Following the end of the MBCV campaign, Janssen has donated the respective installation pieces to Anthony Nolan. The total cost of this donation is £6,500.00 (£500.00 per name).

Name of the Patient Organisation Website Amount Date of Contract
Bloodwise https://www.bloodwise.org.uk Travel cost: £95.95
Installation cost: £7,500 (£500 per name)
July, 2017

Description: Janssen partnered with Bloodwise to bring to life the ‘Make Blood Cancer Visible’ (MBCV) 2017 disease awareness campaign. The aim of the campaign was to increase public awareness and education during the month of September 2017, so that we can together change the lack of insight and understanding around blood cancers amongst the UK public. The campaign focussed around an art installation, designed and created by Paul Cocksedge Studio. The installation represented the 104 individuals that are diagnosed with blood cancer every day, raising awareness and bringing to life their experiences through their own stories. The installation was located in Paternoster Square, London and was available to view from the 4th-30th September 2017.

No fee was paid to Bloodwise to partner with Janssen on the MBCV campaign. Janssen have paid the cost of travel for two Bloodwise participants, whose names were included in the installation, and their carers, to travel to London for the installation opening on Monday 4th September 2017. The total cost of this travel is £95.95. Following the end of the campaign, Janssen has donated the respective installation sculptures to Bloodwise. The total cost of this donation is £7,500 (£500 per name).

Name of the Patient Organisation Website Amount Date of Contract
Bloodwise www.bloodwise.org.uk £50,000 December, 2016

Description: Janssen supported Bloodwise to understand current practice in the delivery of the recovery care package and to develop recommendations from this to improve patient care. Funding for 2016 is part of a 3-year partnership between Janssen and Bloodwise.

Name of the Patient Organisation Website Amount Date of Contract
BME Cancer Communities www.bmecancer.com £176.46 July, 2016

Description: Janssen supported BMECC’s attendance at the Janssen Patient Group Summit by covering travel costs.

Name of the Patient Organisation Website Amount Date of Contract
Chronic Lymphocytic Leukaemia Support Association (CLLSA) www.cllsupport.org.uk Travel cost: £30
Installation cost: £3,000.00 (£500.00 per name)
July, 2017

Description: Janssen partnered with Chronic Lymphocytic Leukaemia Support Association (CLLSA) to bring to life the ‘Make Blood Cancer Visible’ (MBCV) 2017 disease awareness campaign. The aim of the campaign was to increase public awareness and education during the month of September 2017, so that we can together change the lack of insight and understanding around blood cancers amongst the UK public. The campaign focussed around an art installation, designed and created by Paul Cocksedge Studio. The installation represented the 104 individuals that are diagnosed with blood cancer every day, raising awareness and bringing to life their experiences through their own stories. The installation was located in Paternoster Square, London and was available to view from the 4th-30th September 2017.

No fee was paid to CLLSA to partner with Janssen on the MBCV campaign. Janssen have paid the cost of travel for one CLLSA participant, whose name was included in the installation, to travel to London for the installation opening on Monday 4th September 2017. The total cost of this travel is £30.00. Following the end of the campaign, Janssen has donated the respective installation sculptures to CLL Support Association. The total cost of this donation is £3,000.00 (£500.00 per name).

Name of the Patient Organisation Website Amount Date of Contract
Chronic Lymphocytic Leukaemia Support Association (CLLSA) www.cllsupport.org.uk £587.83 July, 2016

Description: Janssen supported CLLSA’s attendance at the Janssen Patient Group Summit by covering travel costs.

Name of the Patient Organisation Website Amount Date of Contract
CML Support Group www.cmlsupport.org.uk Travel cost: £26.70
Installation cost: £1,000 (£500 per name)
July, 2017

Description: Janssen partnered with CML Support Group to bring to life the ‘Make Blood Cancer Visible’ (MBCV) 2017 disease awareness campaign. The aim of the campaign was to increase public awareness and education during the month of September 2017, so that we can together change the lack of insight and understanding around blood cancers amongst the UK public. The campaign focussed around an art installation, designed and created by Paul Cocksedge Studio. The installation represented the 104 individuals that are diagnosed with blood cancer every day, raising awareness and bringing to life their experiences through their own stories. The installation was located in Paternoster Square, London and was available to view from the 4th-30th September 2017.

No fee was paid to CML Support Group to partner with Janssen on the MBCV campaign. Janssen have paid the cost of travel for one CML Support Group participant, whose name was included in the installation, to travel to London for the installation opening on Monday 4th September 2017. The total cost of this travel is £26.70. Following the end of the campaign, Janssen has donated the respective installation sculptures to CML Support Group. The total cost of this donation is £1,000 (£500 per name).

Name of the Patient Organisation Website Amount Date of Contract
Crohn’s and Colitis UK crohnsandcolitis.org.uk £40,000 November, 2016

Description: Janssen supported Crohn’s and Colitis UK to develop and improve patient centred outcomes. This is through improving both the offering and the accessibility of patient and members’ information to ensure they are empowered and fully informed.  Funding for 2016 is part of a 3-year partnership between Janssen and Crohn’s and Colitis UK. 

Name of the Patient Organisation Website Amount Date of Contract
Crohn’s and Colitis UK crohnsandcolitis.org.uk £20,000 March, 2017

Description: Janssen supported Crohn’s and Colitis UK to develop and improve patient centred outcomes. This is through improving both the offering and the accessibility of patient and members’ information to ensure they are empowered and fully informed. Funding in 2017 is part of a 3-year partnership between Janssen and Crohn’s and Colitis UK.

Name of the Patient Organisation Website Amount Date of Contract
Crohn’s and Colitis UK crohnsandcolitis.org.uk £200 May, 2017

Description: Janssen supported Crohn’s and Colitis UK with an honorarium of £200 for materials for world IBD day awareness raising in May 2017.

Name of the Patient Organisation Website Amount Date of Contract
Diabetes UK www.diabetes.org.uk £25,000 June, 2017

Description: Janssen supported Diabetes UK Community Champions Programme which targets black and minority ethnic (BMAE) populations who may be at risk of developing or already have type 2 diabetes. Funding for 2017 provided resources to expand the scale and reach of the programme and aid Diabetes UK’s recruitment of volunteers to deliver the programme into the community.

Name of the Patient Organisation Website Amount Date of Contract
Epilepsy Society https://www.epilepsysociety.org.uk/ Non-financial support: Meeting room for 10 people. (Day delegate rate equivalent to £63) N/A

Description: Janssen supported the Epilepsy Society to carry out staff training by providing a meeting room and refreshments at the Janssen offices. This meeting was held in October 2016.

Name of the Patient Organisation Website Amount Date of Contract
Kidney Research UK https://www.kidneyresearchuk.org/ £3,000 June, 2017

Description: Janssen paid Kidney Research UK an honorarium of £3,000 as core funding in 2017. This money will be used by Kidney Research UK to support the day to day operations of the organisation and to enable awareness and education for patients and health care professionals.

Name of the Patient Organisation Website Amount Date of Contract
Kidney Research UK https://www.kidneyresearchuk.org/ £146.35 June, 2017

Description: Janssen paid Kidney Research UK an honorarium of £146.35 in June 2017 for a workshop at the Kings Fund, London. The workshop was facilitated by National Voices focussing on patient centricity.

Name of the Patient Organisation Website Amount Date of Contract
Leukaemia CARE www.leukaemiacare.org.uk Travel cost: £153
Installation cost: £3,500 (£500 per name)
July, 2017

Description: Janssen partnered with Leukaemia CARE to bring to life the ‘Make Blood Cancer Visible’ (MBCV) 2017 disease awareness campaign. The aim of the campaign was to increase public awareness and education during the month of September 2017, so that we can together change the lack of insight and understanding around blood cancers amongst the UK public. The campaign focussed around an art installation, designed and created by Paul Cocksedge Studio. The installation represented the 104 individuals that are diagnosed with blood cancer every day, raising awareness and bringing to life their experiences through their own stories. The installation was located in Paternoster Square, London and was available to view from the 4th-30th September 2017.

No fee was paid to Leukaemia CARE to partner with Janssen on the MBCV campaign. Janssen have paid the cost of travel for one Leukaemia CARE participant, whose name was included in the installation, and their carer, to travel to London for the installation opening on Monday 4th September 2017. The total cost of this travel is £153. Following the end of the campaign, Janssen has donated the respective installation sculptures to Leukaemia CARE. The total cost of this donation is £3,500 (£500 per name).

Name of the Patient Organisation Website Amount Date of Contract
Leukaemia CARE www.leukaemiacare.org.uk £202.57 July, 2016

Description: Janssen supported Leukaemia CARE’s attendance at the Janssen Patient Group Summit by covering travel costs.

Name of the Patient Organisation Website Amount Date of Contract
Leukaemia CARE www.leukaemiacare.org.uk Notional Value of £1,661 November 2016

Description: Janssen supported Leukaemia CARE with media training with costs totalling £1,661.

Name of the Patient Organisation Website Amount Date of Contract
Leukaemia CARE www.leukaemiacare.org.uk £8,339 December 2016

Description: Janssen supported Leukaemia CARE in its core activities that include the 24hr CARE line, nurse advisor service and patient information booklets.

Name of the Patient Organisation Website Amount Date of Contract
Liver4Life http://www.liver4life.org.uk £101.18 July, 2016

Description: Janssen supported Liver4life ‘s attendance at the Janssen Patient Group Summit by covering travel costs.

Name of the Patient Organisation Website Amount Date of Contract
Lymphoma Association www.lymphomas.org.uk Travel cost: £466.35
Installation cost: £4,500 (£500 per name)
July, 2017

Description: Janssen partnered with Lymphoma Association to bring to life the ‘Make Blood Cancer Visible’ (MBCV) 2017 disease awareness campaign. The aim of the campaign was to increase public awareness and education during the month of September 2017, so that we can together change the lack of insight and understanding around blood cancers amongst the UK public. The campaign focussed around an art installation, designed and created by Paul Cocksedge Studio. The installation represented the 104 individuals that are diagnosed with blood cancer every day, raising awareness and bringing to life their experiences through their own stories. The installation was located in Paternoster Square, London and was available to view from the 4th-30th September 2017.

No fee was paid to Lymphoma Association to partner with Janssen on the MBCV campaign. Janssen have paid the cost of travel for six Lymphoma Association participants, whose names were included in the installation, to travel to London for the installation opening on Monday 4th September 2017. The total cost of this travel is £466.35. Following the end of the campaign, Janssen has donated the respective installation sculptures to Lymphoma Association. The total cost of this donation is £4,500 (£500 per name).

Name of the Patient Organisation Website Amount Date of Contract
Lymphoma Association www.lymphomas.org.uk £46.41 July, 2016

Description: Janssen supported Lymphoma Association’s attendance at the Janssen Patient Group Summit by covering travel costs.

Name of the Patient Organisation Website Amount Date of Contract
Lymphoma Association www.lymphomas.org.uk £4,000 December, 2016

Description: Janssen supported £4,000 for Lymphoma Association patient information activities.

Name of the Patient Organisation Website Amount Date of Contract
Lymphoma Association www.lymphomas.org.uk £4,000 December, 2016

Description: Janssen supported £4,000 for Lymphoma Association Core Med-ed activities, funding a national education and training programme for health professionals.

Name of the Patient Organisation Website Amount Date of Contract
Lymphoma Association www.lymphomas.org.uk £4,000 December, 2016

Description: Janssen supported £4,000 for Lymphoma Association national patient conference programme establishing a partnership between the two organisations in the same field.

Name of the Patient Organisation Website Amount Date of Contract
Martin Fisher Foundation www.martinfisherfoundation.org £15,000 September, 2016

Description: Janssen supported Martin Fisher Foundation to work with the local NHS Trust to develop and provide resource to support self-test vending machines for HIV in Brighton.

Funding for 2016 provided the resources to initiate the training of staff and project management for the project to move ahead with development of this for local populations at risk.

Name of the Patient Organisation Website Amount Date of Contract
MDS UK Patient Support Group www.mdspatientsupport.org.uk Installation cost: £4,500 (£500 per name) July, 2017

Description: Janssen partnered with MDS UK Patient Support Group (MDS UK) to bring to life the ‘Make Blood Cancer Visible’ (MBCV) 2017 disease awareness campaign. The aim of the campaign was to increase public awareness and education during the month of September 2017, so that we can together change the lack of insight and understanding around blood cancers amongst the UK public. The campaign focussed around an art installation, designed and created by Paul Cocksedge Studio. The installation represented the 104 individuals that are diagnosed with blood cancer every day, raising awareness and bringing to life their experiences through their own stories. The installation was located in Paternoster Square, London and was available to view from the 4th-30th September 2017.

No fee was paid to MDS UK to partner with Janssen on the MBCV campaign. Following the end of the campaign, Janssen has donated the respective installation sculptures to MDS UK. The total cost of this donation is £4,500 (£500 per name).

Name of the Patient Organisation Website Amount Date of Contract
MDS UK www.mdspatientsupport.org.uk £5,000 December 2016

Description: Janssen provided £5,000 core support for MDS UK's patient materials and filming. This support of MDS UK's core activities and work also includes both parties to begin identifying areas for co-collaboration in 2017 in supporting patients with Myeloids.

Name of the Patient Organisation Website Amount Date of Contract
Myeloma UK www.myeloma.org.uk Travel cost: £297.20
Installation cost: £2,500.00 (£500.00 per name)
July, 2017

Description: Janssen partnered with Myeloma UK to bring to life the ‘Make Blood Cancer Visible’ (MBCV) 2017 disease awareness campaign. The aim of the campaign was to increase public awareness and education during the month of September 2017, so that we can together change the lack of insight and understanding around blood cancers amongst the UK public. The campaign focussed around an art installation, designed and created by Paul Cocksedge Studio. The installation represented the 104 individuals that are diagnosed with blood cancer every day, raising awareness and bringing to life their experiences through their own stories. The installation was located in Paternoster Square, London and was available to view from the 4th-30th September 2017.

No fee was paid to Myeloma UK to partner with Janssen on the MBCV campaign. Janssen have paid the cost of travel for seven Myeloma UK participants, whose names were included in the installation to travel to London for the installation opening on Monday 4th September 2017. The total cost of this travel is £297.20. Following the end of the campaign, Janssen has donated the respective installation pieces to Myeloma UK. The total cost of this donation is £2,500.00 (£500.00 per name).

Name of the Patient Organisation Website Amount Date of Contract
Myeloma UK www.myeloma.org.uk £15,000 July, 2014

Description: Janssen provided an educational grant to support Myeloma UK’s "Myeloma Patient and Family Infoday programme".

Infodays aim to support patients and carers in a variety of ways, for example, by providing information on the disease, creating an opportunity to meet with others to share experiences, and provide a greater understanding of services and treatments available.

Name of the Patient Organisation Website Amount Date of Contract
Myeloma UK www.myeloma.org.uk £290.54 June, 2017

Description: Janssen supported Myeloma UK with an honorarium of £290.54 in June 2017 for a workshop at the Kings Fund, London. The workshop was facilitated by National Voices focussing on patient centricity.

Name of the Patient Organisation Website Amount Date of Contract
NAM Publications (NAM) www.aidsmap.com £30,000 November, 2016

Description: Janssen supported NAM Publications to set up a project to support people living with HIV to live long and healthy lives.
Funding for 2016-2017 provided the resources to set up three work-streams of a two-year partnership:

-       To develop introductory patient resources focusing on living with HIV long-term

-       To update and develop online interactive tool with the aim of empowering people with HIV to assess their readiness for treatment and to  have informed conversations with their healthcare professional

-       To facilitate access to patient information materials through clinics which are currently unable to provide such resources

Name of the Patient Organisation Website Amount Date of Contract
NAM Publications (NAM) www.aidsmap.com £19,131 July, 2016

Description: Janssen supported NAM Publications in 2016 by providing annual grants of £8,609 and £10,522 for their websites aidsmap.com and infohep.org respectively.

The grants mainly supported the news services provided by both, including conference reporting from the key scientific meetings in both HIV and hepatitis. The grants' outputs included detailed news stories and multilingual summary email bulletins.

Name of the Patient Organisation Website Amount Date of Contract
NAM Publications (NAM) http://www.aidsmap.com/ €2,425 February, 2017

Description: Janssen supported NAM Publications (NAM) with an honorarium of €2,425 to run three workshops at the HIV Experience Exchange meeting which took place in Amsterdam in March 2017. The workshops focused on how to improve the doctor-patient relationship and were presented to (clinicians and Janssen staff attending the event).

Name of the Patient Organisation Website Amount Date of Contract
National Ankylosing Spondylitis Society https://nass.co.uk/ £195 June, 2017

Description: Janssen supported National Ankylosing Spondylitis Association with an honorarium of £195 for a workshop at the Kings Fund, London. This workshop was facilitated by National Voices focussing on patient centricity.

Name of the Patient Organisation Website Amount Date of Contract
National Rheumatoid Arthritis Society www.nras.org.uk £33.76 July, 2016

Description: Janssen supported National Rheumatoid Arthritis Society’s attendance at the Janssen Patient Group Summit by covering travel costs.

Name of the Patient Organisation Website Amount Date of Contract
National Rheumatoid Arthritis Society www.nras.org.uk £1,000 May, 2017

Description: Janssen supported National Rheumatoid Arthritis Society (NRAS) with an honorarium of £1,000 in May 2017. This support contributed towards NRAS attendance to the primary conference in the disease area in 2017 (The British Society of Rheumatology meeting).

Name of the Patient Organisation Website Amount Date of Contract
Prostate Cancer UK www.prostatecanceruk.org/ £415.15 July 2016

Description: Janssen supported Prostate Cancer UK’s attendance at the Janssen Patient Group Summit by covering travel costs totalling £415.15.

Name of the Patient Organisation Website Amount Date of Contract
Prostate Cancer UK www.prostatecanceruk.org/ £60,000 November 2016

Description: Janssen supported Prostate Cancer UK to further support the Hear Me Now campaign which tackles the inequalities faced by BAME men who have higher rates of getting prostate cancer and lower diagnosis rates and worse outcomes. This is part of an 18-month partnership.

Name of the Patient Organisation Website Amount Date of Contract
Rethink www.rethink.org £2,880 May, 2017

Description: Janssen supported Rethink with an honorarium of £2,880 to run a workshop for Janssen internal staff at Janssen Offices in May 2017. The workshop focused on supporting staff to understand the impact and importance of mental health in the workplace.

Name of the Patient Organisation Website Amount Date of Contract
Rethink www.rethink.org £195 June, 2017

Description: Janssen paid Rethink an honorarium of £195 in June 2017 for a workshop at the Kings Fund, London. The workshop was facilitated by National Voices focussing on patient centricity.

Name of the Patient Organisation Website Amount Date of Contract
Rethink Mental Illness www.rethink.org £50,000 December, 2016

Description: Janssen supported Rethink to identify and understand current evidence bases and develop tools which may benefit patients’ carers and healthcare professionals. Funding for 2016 was part of an 18-month partnership with Rethink.

Name of the Patient Organisation Website Amount Date of Contract
Shine Cancer Support http://www.shinecancersupport.org/ £18.16 June, 2017

Description: Janssen supported Shine Cancer Support with an honorarium of £18.16 in June 2017 for a workshop at the Kings Fund, London. The workshop was facilitated by National Voices focussing on patient centricity.

Name of the Patient Organisation Website Amount Date of Contract
Tackle Prostate Cancer www.tackleprostate.org £7,500 December 2016

Description: Janssen supported Tackle with £7,500 to support core activities that include: production of members’ newsletter, operational support for local pc groups across the country and setting up their new website.

Name of the Patient Organisation Website Amount Date of Contract
The Psoriasis Association www.psoriasis-association.org.uk £116.28 July, 2016

Description: Janssen supported Psoriasis Association’s attendance at the Janssen Patient Group Summit by covering travel costs.

Name of the Patient Organisation Website Amount Date of Contract
Waldenström’s Macroglobulinemia UK www.wmuk.org.uk Installation cost: £4,000 (£500 per name) July, 2017

Description: Janssen partnered with Waldenström’s Macroglobulinemia UK (WMUK) to bring to life the ‘Make Blood Cancer Visible’ (MBCV) 2017 disease awareness campaign. The aim of the campaign was to increase public awareness and education during the month of September 2017, so that we can together change the lack of insight and understanding around blood cancers amongst the UK public. The campaign focussed around an art installation, designed and created by Paul Cocksedge Studio. The installation represented the 104 individuals that are diagnosed with blood cancer every day, raising awareness and bringing to life their experiences through their own stories. The installation was located in Paternoster Square, London and was available to view from the 4th-30th September 2017.

No fee was paid to WMUK to partner with Janssen on the MBCV campaign. Following the end of the campaign, Janssen has donated the respective installation sculptures to WMUK. The total cost of this donation is £4,000 (£500 per name).

Name of the Patient Organisation Website Amount Date of Contract
Waldenstroms Macroglobulinaemia UK (WMUK) www.wmuk.org.uk £5,000 December, 2014

Description: Janssen supported Waldenstroms Macroglobulinaemia UK (WMUK) with the setup of a clinical registry for data collection relating to patients with WM. As well as providing a UK wide, up to date clinical database for WM it will also serve as a platform to undertake Quality of Life studies on patients with WM. Janssen will not have any access to the database nor any of the information within the registry.

Name of the Patient Organisation Website Amount Date of Contract
Waldenstroms Macroglobulinaemia UK (WMUK) www.wmuk.org.uk Notional Value of £351 October 2016

Description: Janssen supported WMUK’s attendance to speak at the Janssen Haematology Summit by covering travel and accommodation costs totalling £351.

Name of the Patient Organisation Website Amount Date of Contract
Waldenstroms Macroglobulinaemia UK (WMUK) www.wmuk.org.uk £5,000 December, 2016

Description: Janssen supported £5,000 for WMUK core activities that include patient meetings, WMUK's educational program and WM information leaflets.

Name of the Patient Organisation Website Amount Date of Contract
Waverley Care www.waverleycare.org £429.29 July, 2016

Description: Janssen supported Waverely Care’s attendance at the Janssen Patient Group Summit by covering travel costs.

Name of the Patient Organisation Website Amount Date of Contract
Waverley Care www.waverleycare.org £10,000 October, 2016

Description: Janssen supported Waverley Care over one year, commencing October 2016 to develop their work which focuses on an unmet need in the north eastern African community living in Scotland who are affected by HIV.
Funding for 2016 provided the resources to enable Waverley care to begin to develop support for the community including social and peer support to improve their health outcomes.

Name of the Patient Organisation Website Amount Date of Contract
Waverley Care www.waverleycare.org £181.30 March, 2017

Description: Janssen supported Waverley Care with an honorarium for travel to attend a Janssen open house day. This was delivered in March 2017.

Name of the Patient Organisation Website Amount Date of Contract
Waverley Care www.waverleycare.org Non-financial Support: staff time to facilitate the development of a smart survey (1 person/1day @daily rate £211) April, 2017

Description: Janssen supported Waverley Care to develop a smart survey by providing 1 day of staff time, delivered in April 2017.