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Bounty sold mums’ and babies’ data

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THE INFORMATION Commissioner’s Office (ICO) has fined Bounty (UK) Limited £400,000 for illegally sharing personal information belonging to more than 14 million people.

An ICO investigation found that Bounty, a pregnancy and parenting club, collected personal information for the purpose of membership registration through its website and mobile app, merchandise pack claim cards and directly from new mothers at hospital bedsides.

But the company also operated as a data broking service until April 30, 2018, supplying data to third parties for the purpose of electronic direct marketing.

Bounty breached the Data Protection Act 1998 by sharing personal information with a number of organisations without being fully clear with people that it might do so.

The company shared approximately 34.4 million records between June 2017 and April 2018 with credit reference and marketing agencies, including Acxiom, Equifax, Indicia and Sky.

These organisations represented the four largest recipients out of a total of 39 organisations which Bounty confirmed it shared personal data with.

The personal information shared was not only of potentially vulnerable, new mothers or mothers-to-be but also of very young children, including the birth date and sex of a child.

Steve Eckersley, ICO’s Director of Investigations, said: “The number of personal records and people affected in this case is unprecedented in the history of the ICO’s investigations into data broking industry and organisations linked to this.

“Bounty was not open or transparent to the millions of people that their personal data may be passed on to such large number of organisations. Any consent given by these people was clearly not informed. Bounty’s actions appear to have been motivated by financial gain, given that data sharing was an integral part of their business model at the time.

“Such careless data sharing is likely to have caused distress to many people, since they did not know that their personal information was being shared multiple times with so many organisations, including information about their pregnancy status and their children”

The investigation found that for online registrations, Bounty’s privacy notices had a reasonably clear description of the organisations they might share information with, but none of the four largest recipients was listed.

Additionally, none of the merchandise pack claim cards and offline registration methods had an opt-in for marketing purposes.

Jim Kelleher, Managing Director of Bounty said: “We acknowledge the ICO’s findings – in the past, we did not take a broad enough view of our responsibilities and as a result, our data-sharing processes, specifically with regards to transparency, were not robust enough. This was not of the standard expected of us. However, the ICO has recognised that these are historical issues.

“Our priority is to continue to provide a valuable service for new parents that is both helpful and trusted. As the ICO has highlighted, we made significant changes to our processes in Spring 2018, reducing the number of personal records we retain and for how long we keep them, ending relationships with the small number of data brokerage companies with whom we previously worked and implementing robust GDPR training for our staff.

“Our ‘Bounty Promise’ sets out our continued commitment to carefully look after our members’ personal information. And to ensure our promise is never broken, we will appoint an independent data expert to check how we are doing every year and we will publish their findings annually on the Bounty website.”

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Health

Proton therapy centre officially opened

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HEALTH Minister Vaughan Gething has set out his vision for cutting edge precision medicine to improve health and deliver a sustainable future for NHS Wales.

During, a visit to the Rutherford Cancer Centre in Newport, Mr Gething announced new strategies to transform pathology and precision therapeutics in Wales.

He said: “To address future challenges from the increasing burden of disease we must focus more on prevention, early detection and personalised targeted treatments. Precision medicine will increasingly support a more personalised approach to health and care.

“In Wales, we are already making progress in the field of precision medicine and I am confident that we can be a global player in the race to harness its potential. NHS Wales is on the cusp of realising the significant benefits that can be delivered by advances in precision medicine for patients by offering the right test or treatment at the right time.

“Our long term plan ‘A Healthier Wales’ recognises the importance of moving towards earlier detection and intervention to prevent illness and prolong independence.”

One of the first patients in the UK to receive high-energy proton beam therapy has today praised UK oncologists for embracing proton beam therapy and the transformative effects it has had on his treatment.

Ryan Scott, 23, from Cardigan in Wales, underwent treatment for a brain tumour (grade 1 craniopharyngioma) at the Rutherford Cancer Centre South Wales in Newport as part of NHS Wales’ proton beam therapy treatment pathway for adults.

Ryan Scott said: “I was very pleased when my consultant recommended proton beam therapy and told me that it was available close to home in South Wales. I was due to be treated with proton beam therapy over the course of eight weeks in the United States, a disruption I was not looking forward to. Happily, however, the agreement between NHS Wales and the Rutherford Cancer Centres was struck just in time for me to be treated a short drive from home.

“The process of undergoing proton beam therapy was much better than anticipated. There have been hardly any side effects and being able to sleep in my bed after a day’s treatment is a real plus.”

Mr Gething explained the Welsh Government had a clear vision for harnessing technology to deliver precision medicine in diagnostics and therapy that will ensure a sustainable future for NHS Wales.

“The Rutherford Cancer Centre in Newport, which was the first facility in the UK to offer proton beam therapy for cancer patients, is an excellent example of the development of new cancer therapies, here in Wales. It’s a perfect illustration of how we are working collaboratively to deliver technological innovations to improve treatment,” he said.

“Today I have published our Statement of Intent for Advanced Therapeutic Medicinal Products, which sets out how we will deliver precision therapeutics, like new cell therapies, in Wales.

“Alongside this, I have published a Statement of Intent to transform pathology services. All this builds on our recent investment in diagnostic services such as the new Imaging Academy for Wales.

“In this financial year, I am pleased to provide additional funding of £2.3m to support the delivery of new genetic tests together with a further £2m to support national plans for transforming diagnostic, health science and advanced therapeutic medical services in NHS Wales.”

Andrew Goodall, chief executive of NHS Wales, also attended today’s official opening.

The centre is part of a nationwide network that provides state-of-the-art cancer services including imaging, chemotherapy, immunotherapy, radiotherapy and high energy proton beam therapy.

The Newport centre was recently approved by the Welsh Health Specialised Services Committee (WHSSC) to provide high energy proton beam therapy to adult patients referred from the NHS in Wales, the centre also treated the first patient in the UK with proton beam therapy in April last year.

Mike Moran, chief executive of Proton Partners International which operates the Rutherford Cancer Centres, said: “It is gratifying to see UK oncologists becoming increasingly aware of proton therapy and embracing the treatment. Our collaborative partnership with the NHS in Wales means that adult patients have an option to be treated closer to home.”

“I am delighted by the support we have received from the Health Minister, the Welsh Government, the Wales Life Sciences Investment Fund and the NHS in Wales which has meant that Wales has been the pioneer in proton beam therapy in the UK. Patient demand is increasing and it is encouraging that the UK is beginning to catch up with Europe in the provision of this therapy.”

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Health

Get Mouthy About Cancer

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THE HEAD and Neck Cancer Foundation (HNCF) is calling all Brits to ask their dentists to conduct mouth cancer screens at their next appointment. This should be routinely included within the price of a dental check-up and should take no more than one minute.

Consumer research conducted by HNCF in partnership with YouGov – as part of its Get Mouthy About Cancer campaign – shows that we could all be doing more to specifically drive early diagnosis of mouth cancers.

Early detection is paramount to improving patient outcomes – as these types of cancers can be extremely aggressive, disfiguring and life-limiting.

HNCF’s research asked people in Wales how often they have routine dental check-ups and if they are receiving mouth cancer screening.

6% of people in Wales admit to never going to the dentist for a check-up and a further 3% said they do not recall the last time they went to the dentist

Only half of the Welsh population visit the dentist every six months for a routine check-up.

Shockingly, over half (51%) of those in Wales stated that they were not sure if their dentist had carried out a mouth cancer check at their last check-up

When looking nationally at overall awareness of mouth cancer screening – nearly three-quarters of all Brits stated their dentist does not do a regular mouth cancer screen, or they are unaware of it being done during their last check-up. Which means the vast majority of us are missing out on this simple routine and potentially life-saving screen.

Michelle Vickers, CEO at The Head and Neck Cancer Foundation commented on the findings: “As a nation, we are regrettably unaware that our dentists can play a huge role in oral cancer detection and be routinely screening for signs of mouth cancer during check-ups. Dentists are taught to do this as part of their standard oral check-up process. If people were screened they would know – as the tongue is held to either side of the mouth and the dentist is likely to follow the gums for signs of abnormal growth. We are asking everyone to ask their dentist for a routine screen the next time they visit – it’s really that simple.

“We’ve introduced our Get Mouthy About Cancer campaign because we all hear so often (and know how) to check our boobs or balls – but I bet the majority of people are unaware of what they’re looking for in their mouth! 31 people are diagnosed with head and neck cancers each day in the UK – so it’s time to get talking about what to look for. We brush our teeth daily – just an extra 30-60 seconds to check oral health could save your life!”

To find out how to check please watch HNCF’s video: http://bit.ly/HNCFWales. Once you’ve seen this video you will know whether your dentist is checking your mouth, or not, and how to check yourself at home.

Professor Mark McGurk, world-renowned surgeon and founder of HNCF added: “We want everyone to be having a conversation about mouth cancers. By bringing routine mouth checks front-of-mind and putting it on the agenda – we will raise awareness, raise the number of early detections and reduce the number of people facing stage two and three mouth cancers.”

For those patients who do detect mouth cancer early, technological and medical innovation means that treatment can now be offered in a much less invasive manner, by using the Sentinel Node Biopsy technique (SNB). SNB is an alternative and significantly less invasive treatment for dealing with head and neck cancers. The fluorescent camera and technology locates the nodes in the neck that will contain migrating cancer cells so that these can be targeted and removed – this saves over 70% of patients with early disease from a neck dissection. It spares vital glands and helps patients get back to a normal life more quickly, compared to traditional neck dissection techniques.

SNB has been endorsed by the National Institute for Health and Care Excellence (NICE), is fully adopted in Denmark and the Netherlands, and is growing in deployment across Europe and the US. This practice, pioneered by Professor Mark McGurk, is the result of 15 years’ development and is based on the findings of nearly 500 cases.

HNCF works to educate and train both surgeons and nurses around the UK on this treatment and state-of-the-art technology, to bring a better outcome and time-saving treatment to oral cancer patients.

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Health

WG and BMA clash on GP standards

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AS THE growing crisis in West Wales’ GP services continues, the Welsh Government last week announced a new set of standards, which it claims will raise and improve the level of service for patients.

Recent National Survey results showed a decline in satisfaction with GP services from 90% being satisfied in 2016-17 to 86% in 2017-18 and 42% of participants found it difficult to make an appointment at their practice an increase from 38% in the previous year.

The Welsh Government says that ‘people in Wales should know what to expect when they need advice on their health and wellbeing, when they need to consult a GP or other healthcare professional and what other options are available to them’.

To support the above, the new standards are as follows:
• People receive a prompt response to their contact with a GP practice via telephone.
• Practices have the appropriate telephony systems in place to support the needs of people avoiding the need to call back multiple times and will check that they are handling calls in this way.
• People receive bilingual information on local and emergency services when contacting a practice.
• People are able to access information on how to get help and advice.
• People receive the right care at the right time in a joined-up way which is based on their needs.
• People can use a range of options to contact their GP practice.
• People are able to email a practice to request a non-urgent consultation or a callback.

The Welsh Government expects all GP practices in Wales, supported by their Local Health Boards, to meet these standards by March 2021. Financial support, which will be announced in due course, will be made available to GP practices to strive towards meeting these standards and ensuring patients across Wales know what to expect from their practice.

Vaughan Gething said: “I know GPs and their practice teams are under pressure to meet demand but I also know people’s expectations on GP access are not currently being met.

“Today’s announcement is not about putting additional pressure on our GP services, it is about them delivering a level of service patients in Wales should expect as a minimum. For many practices across Wales, the standards I’ve announced today will already be in place, but for others, this will be a journey of improvement. Over time I would like to see these standards developed further so that services are continually improving for the citizens of Wales.”

Responding to the Welsh Government’s announcement Dr Charlotte Jones, chair of the BMA’s Welsh GPs’ committee said: “GPs in Wales work extremely hard – often to the detriment of their own health – to ensure that patients are seen in a timely manner and this is reflected in the still very high satisfaction ratings.

“Whilst we accept, welcome and strive for better access for patients recognising the challenges patients face, the way to address this is to support GP practices to release capacity for patients who need their care. This can be achieved through improving recruitment of GPs, practice nurses and ensuring the wider multi-disciplinary primary and community care workforce are in place. It can be achieved through ensuring patients are empowered to self-care when appropriate. It can be achieved through resourcing supporting infrastructure for practices to take forward different ways of providing access; through properly supporting practices and enhancing the partnership model so that we have sustainable services available to patients.

“Imposing standards on an already overstretched workforce is not the best way to achieve the shared aim of improving access.

“We will continue to work with the Welsh Government to ensure that patients are seen in a way that is most suitable and appropriate for their need. This work needs to also include robust support for practices so that they have the resources they need to address the challenges they face on a day to day basis, where they are fire-fighting to meet ever increasing demand and thus enable them to have the capacity to develop their access arrangements for patients.”

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