Denise Nolson, 46, on remaining positive while dealing with illness

by John Pinching 10. February 2017 12:26

 

 

A series of interviews in which patients share their experiences - in their own words

 

Please tell us about your condition

My name is Denise Nolson. I’m 46, happily single and two years ago, I was diagnosed with rheumatoid disease (RD). Three months later I had to sign off sick from work, due to daily pain and fatigue, and - although I'd love to return to employment - at present I consider myself medically retired. I've since been diagnosed with fibromyalgia, ME and Sjögren's syndrome, all of which are commonly linked with RD.

 

What treatment or therapy do you use?

I'm on biologic medication for my RD, plus several other daily medications including anti-depressants, pain relief, factor V Leiden, and treatments for IBS and hypertension. Alongside these I have found holistic practices helpful, such as conscious breathing, meditation and chanting, as well as an electric under-blanket, heating pads, Voltaren gel and compression gloves.

 

What impact has it made on your life?

This could be a book! In chronological order, I have experienced constant pain, fatigue, losing my job and my house, homelessness, major anxiety attacks and worsening depression. In addition, I’ve become physically disabled, required crutches to walk, a mobility scooter, raised toilet seat, shower chair, bed rails and grab bars outside my front door. The situation has been further compounded by not being able to wash or dress myself on some days, sleeping for up to 18 hours and, conversely, having to endure bouts of insomnia.

 

Is adherence - sticking with your treatment regime - a challenge?

Not at all, it's a pain, but manageable on most days. I set the alarm for morning tablets, eye drops and mouth spray, and take a lax powder drink an hour later. The alarm sounds again in the evening for tablets, night eye gel and another lax powder drink. Then there’s a further alarm every two weeks for a biologic injection. I also self-manage pain, using paracetamol, tramadol and hydrocodone. It would be a real struggle to manage around working, or a family, but living alone means my life can be very simple. It's become a necessity.

 

What side effects, if any, do you have to manage?

Headaches, dry skin, eyes and mouth and bowel pain.

 

Are you getting enough information about what medicine you take?

Yes, but mainly because I self-educate. Shortly after diagnosis I started sharing my story through my blog - Singlerheum - and the online RD community has proved to be an amazing support network, which I'm proud to be a part of.

 

Are you looking for an improved treatment?

I'm looking for a cure! But in the meantime, an effective treatment would be great. I'm on my fifth RD med with no improvement so far.

 

Do you think that the pharma industry listens to you?

Honestly? I don't think they care, although I'd love to be proved wrong. A lack of thought given to containers alone causes millions of patients to experience further hardship. As both an active patient and advocate with RD I've never been asked any questions by the pharma industry. I have, however, signed up for a new med packaging trial next year, so we'll see.

 

How would you like to see communication with drug manufacturers improve?

I don't think there is any communication. In the UK, you are prescribed a med and you take it - that’s it. You have no say in terms of the brand, manufacturer and packaging. I'd love to see customer service advice lines, plain English on information leaflets and drug manufacturers with patient-friendly social media platforms that encourage open and unsolicited communication.

 

Are you feeling positive about the future?

Yes. Despite worsening mobility and physical health - and thanks in no small part to a fabulous GP and some great private therapy - I'm working on being grateful for the good in my life and also achieving peace. Acceptance of my multiple conditions has certainly gone a long way towards that. I have the support and love of friends and family, as well as the online RD community, and that keeps me moving!

 

For advice and support go to rheumatology.org

Find out more about Denise story at singlerheum.com 

 

‘The Patient Voice’ interviews are a collaboration between Pf Magazine and talkhealth.

talkhealth is one of the leading online health communities in the UK, providing free information and support to those with chronic health conditions; whilst collaborating with pharmaceutical and healthcare companies, charities and medical professionals to develop sustainable health programmes and solutions.

 

 

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Features

Drug-resistant bacteria is threatening global health

by Amy Schofield 10. February 2017 09:09

 

Apocalypse Now: The advance of drug-resistant bacteria threatens global health – what’s being done to protect us?

Imagine a world where simple surgeries carry the risk of death. Where common infectious diseases – which previously posed no threat – could kill you, and where giving birth becomes life-threatening.

Before the invention of antibiotics, this was the perilous existence of our ancestors. We could, however, be returning to those dark ages, as the overuse of antibiotics brings with it the very real worldwide scourge of antimicrobial resistance (AMR).

“The threat is very serious,” said microbiologist Dr Jessica Blair PhD, of the Institute of Microbiology and Infection at the University of Birmingham. “Multi–drug resistant infections currently kill 700,000 people annually and this figure is rising every year. If this rise continues at current rates then it is predicted that by 2050 there will be 10 million deaths every year due to multi-drug resistant infections.”

The lack of novel drugs in development to replace those we can no longer use, due to resistance, means that Chief Medical Officer for England Professor Dame Sally Davies’ warning of an “antibiotic apocalypse” was no exaggeration.

“The use of antimicrobials underpins modern medicine,” added Dr Blair. “Without action now many simple infections will once again become untreatable.”

AMR threatens the effective prevention and treatment of a continually expanding range of infections caused by microorganisms such as bacteria, parasites, viruses and fungi.

AMR occurs when these microorganisms alter after being exposed to antimicrobial drugs including antibiotics, antifungals, antivirals and antimalarials. Sometimes referred to as ‘superbugs’, microorganisms that develop AMR are rendering antimicrobial medicines ineffective, meaning that infections persist, increasing the risk of an infection – with nothing to fight it. New resistance mechanisms are now emerging all the time and spreading across the world, threatening global public health.

 

Nightmare

AMR is compromising the fight against diseases including tuberculosis (TB), HIV and malaria and – without antibiotics that work – the successful outcomes of minor and major surgery, and cancer chemotherapy will be seriously compromised.

Figures from the World Health Organisation (WHO) show that 480,000 people develop multi-drug resistant TB each year. According to Dame Sally’s foreword to a report on AMR, from Lord Jim O’Neill and the Institute and Faculty of Actuaries, 50,000 people are dying every year in Europe and the US from infections that antibiotics have simply lost the power to treat. She warned that the death toll could increase worldwide and that our ever-increasing life spans may end up falling.

“The projected figures are much more worrying. It is quite possible – and perhaps even likely – that the recent era of material mortality improvements will give way to many years of material mortality worsening,” Dame Sally warned.

One study concluded that 70% of bacteria around the world have already developed resistance to antibiotics, including colistin, which is described as the last resort of antibiotics, due to its side effects.

It’s not just the over–use and misuse of antibiotics by humans which has contributed to the crisis; the growth of factory farming is linked with the development of AMR bacteria. Indeed, two-thirds of antibiotic consumption in the EU occurs in animal farming.

The human – as well as the economic cost – of AMR is massive, and until new medicines are developed, it can only grow. But there are exciting new developments afoot, giving hope to a world currently under considerable threat.

  

Antibiotic Guardian campaign

The Antibiotic Guardian campaign from Public Health England is asking the public, students, educators, farmers, the veterinary and medical communities and professional organisations to choose ‘one simple pledge’ about how they will make better use of antibiotics to slow resistance. Go to antibioticguardian.com

 

Action Stations

In September 2016, 193 countries signed a landmark UN Declaration agreeing to combat AMR. Signed at the United Nations General Assembly in New York, the agreement followed a worldwide campaign led by Dame Sally and Health Secretary Jeremy Hunt to highlight the threat posed by resistance to antibiotics.

The nations duly committed to tackling drug-resistant infections as a priority, and agreed to develop surveillance and regulatory systems on the use and sales of antimicrobial medicines for humans and animals, encourage innovative ways to develop new antibiotics and improve rapid diagnostics. They will also carry out awareness-raising activities to educate healthcare professionals and the public on how to prevent drug resistant infections.

At the time, Dame Sally said: “We need governments, the pharmaceutical industry, health professionals and the agricultural sector to follow through on their commitments to save modern medicine.” The UN Secretary General is to report back on progress within two years.

Meanwhile, Dr Blair is spearheading a national campaign – Antibiotic Action. It is a public awareness initiative of the British Society for Antimicrobial Chemotherapy (BSAC) and works to inform everyone about drug resistance – including members of the public, scientists, HCPs and politicians.

“We need to make people aware of the issue of antibiotic resistance and try to help people understand the threat,” said Dr Blair. “The main messages are to urge everyone to use existing antibiotics wisely and promote the importance of infection prevention and control.” Go to antibioticaction.com

 

Discoveries in 2016

1. The European Commission (EC) granted marketing authorisation for AstraZeneca’s new combination antibiotic Zavicefta (ceftazidime-avibactam), developed for the treatment of patients with serious gram-negative bacterial infections, which require hospitalisation.

2. Scientists at Germany’s University of Tubingen discovered that people with the bug Staphylococcus lugdunensis (S. lugdunensis), present in their nostrils, were less likely to also have Staphylococcus aureus (S.auresus), including the superbug strain MRSA. Researchers identified the single gene that contained the instructions for building a new antibiotic which could treat superbug infections and named it lugdunin. Tests on mice showed that it could treat MRSA, as well as Enterococcus infections.

3. Life scientists at UCLA discovered that combinations of three different antibiotics from a group of 14 drugs can often overcome bacteria’s resistance to antibiotics, even if they are ineffective on their own or when combined with one other.

4. Symcel partnered with Colzyx to test 25 different new collagen VI derived anti-microbial peptides, analysing their capability to kill bacterial growth in different ways.

 

Wake up call

The ‘golden era’ of antibiotics research and development – when new medicines were being discovered – is toast. The old model, where pharma companies developed a new drug, then sold as much as possible of it, is no longer working, as old medicines lose their ability to fight infection. New products, therefore, must be used sparingly to avoid a repeat.

In his report, Lord O’Neill proposed a new way of repaying pharma companies for new antimicrobial medicines, through a ‘market entry reward’ payment of around $1.3bn (£890m) to the company that develops an effective new antibiotic for an ‘unmet need’.

Dr Jessica Blair is currently undertaking research to gain an understanding of the mechanisms of drug resistance in gram-negative bacteria. “By understanding the mechanisms we are better placed to target them with new drugs,” she said.

Dr Blair’s research involves efflux pumps – molecular pumps in the membrane of bacterial cells. “Efflux pumps are able to pump the antibiotic molecules straight back out of the cells allowing bacteria to survive the antibiotic treatment,” she explained. “Through this research we hope to be able to develop inhibitor molecules against these pumps that could be administered with existing antibiotics to restore sensitivity to these drugs.”

Dr Bjorn Herpers, clinical microbiologist at the Regional Public Health Laboratory in Haarlem in the Netherlands, said: “As all traditional antibiotics have eventually led to resistance, developing ‘new’ antibiotics of the traditional type isn’t the answer.”

The use of endolysins presents another new strategy. These are special enzymes that cleave the bacterial cell wall – a mechanism with no risk of generating resistance. “This resolves the doctor’s dilemma of not wanting to withhold a potential beneficial treatment to an individual patient, but having to be restrictive with antibiotics because of the risk of resistance induction,” added Dr Herpers.

Together with the Technical University of Zurich and the Dutch biotech company Micreos, he has successfully tested Staphefekt, the first endolysin available to the public for use against the bacteria Staphylococcus aureus, including the resistant type MRSA.

In further developments, Dame Sally Davies launched a new initiative at the London School of Hygiene and Tropical Medicine (LSHTM), in December 2016, to address the challenge of AMR. Giving the keynote speech at the launch of the School’s new Antimicrobial Resistance Centre, Dame Sally said: “We have a duty of solidarity to sort this, we cannot step back and watch it happen – we have to work out how to make a difference.”

The exciting research and development currently underway – along with action at local, national and international level – presents new hope that this potential global disaster can be averted.   

 

 

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Features

Pharma & NHS: Solving the puzzle together

by Amy Schofield 2. February 2017 10:06

 

 

How is industry working with the NHS to deliver the best possible outcomes for patients?

Cross-sector joint working initiatives are witnessing the NHS deliver better outcomes for patients, by drawing on the extensive knowledge and expertise of the pharma industry.

Joint working ensures that patients receive optimal care and support to help them maximise the benefits of their treatment.

The Association of the British Pharmaceutical Industry (ABPI) produced a toolkit in 2012, when the concept was in its infancy. ‘Joint Working – A quick start reference guide for NHS and pharmaceutical industry partners’ describes these inter-sector partnerships as: ‘Situations where, for the benefit of patients, NHS and industry, organisations pool skills, experience and/or resources for the joint development and implementation of patient-centred projects and share a commitment to successful delivery.’

In delivering all that it promises in its ‘Five Year Forward View’, the NHS faces many challenges, including intense financial pressures and an unrelenting drive to improve quality and productivity.

Kopano Mukelabai, National Programmes Manager, Roche UK, said that the chance to work together exists despite – or perhaps because of – the challenges facing the health service: “There is real opportunity for this country to be a global leader in healthcare, even at these times when NHS finances are under severe strain.”

As a result of these difficulties, NHS organisations are increasingly calling on external expertise to supplement existing skills and resources, helping them rise to the challenges they face. This is where pharma enters the equation.

 

Two hearts

The pharmaceutical industry not only develops and supplies medicines that improve patients’ lives, it also brings business and financial expertise and a vast knowledge of therapy areas – essential for joint working initiatives with the NHS.

The Department of Health and the ABPI – along with pharmaceutical companies and other key industry bodies – are actively promoting joint working initiatives.

Harriet Lewis, NHS Engagement Partner (North) and Medicines Optimisation Lead at the ABPI, explained: “The pharmaceutical industry is wholly committed to working in partnership with NHS providers and commissioners to improve outcomes for patients, both nationally and regionally.”

The ABPI has four regional expert networks that focus on partnership working to support the NHS in delivering efficient and transformational services and care for patients. They provide opportunities for collaborations that focus on delivering benefits for patients, ranging from addressing pathway challenges, reducing unwarranted variation in care across regions and service arrangements to improve patient access to innovative treatments.

The Greater Manchester Diabetes Partnership – a collaboration between the NHS, ABPI, and a number of pharmaceutical companies – was set up in February 2016 to explore ways to enhance diabetes care. 

“By establishing a more integrated approach to patient care across Greater Manchester, with support from providers, commissioners, and third-sector stakeholders, the Partnership is working to improve patient outcomes and reduce unwarranted variation across the area,” reflected Harriet.

Collaborative working presents its own challenges, however. “When initiating joint projects between the NHS and industry, they often require more than one company to be involved,” added Harriet. “There can, therefore, be delays and barriers, as each side negotiates its responsibilities and roles to ensure a fair division of work among all involved. We believe, however, that by helping to sustain the NHS for the future, by working side-by-side with healthcare professionals and fully understanding the needs of patients, we can work together to improve the long–term care for patients.”

 

Seeds of change

Department of Health guidance encourages NHS organisations and their staff to consider opportunities for joint working with the pharmaceutical industry, where benefits to patient care and the difference it can make to their health are clearly beneficial.

In 2008, the Department of Health produced, ‘Best practice guidance for joint working between the NHS and the pharmaceutical industry’. It was designed to encourage NHS organisations and staff to consider joint working as a realistic option, and to advise NHS staff of their main responsibilities when considering such partnerships with the pharma industry.

After the publication of the ABPI’s initial toolkit, it released ‘Joint working with the pharmaceutical industry, guide and case studies’, in 2013. This publication shared seven steps to setting up joint projects, as well as providing evidence of successful partnership initiatives.

 

For the common good

Pharma has enthusiastically embraced working in partnership with the NHS, and vice versa. Across industry, projects that support innovation and high-quality patient care have been successfully completed and many more are ongoing, with the common goal of better patient outcomes providing the driving force behind them.

Roche’s Kopano Mukelabai sums up the approach of industry to partnering with the NHS: “Our ultimate goal is to transform the lives of thousands of people in the UK, and beyond, living with devastating conditions. Central to this is our promise to do all we can to ensure patients can access the medicines and tests that we are proud to have worked so hard to develop, while at the same time recognising that – for the NHS to remain sustainable – we all need to work together to ensure that every opportunity to capture value is maximised across the whole pathway.”   

  

5 NHS/Pharma High Fives 

 

1. Giant leaps: GSK

Joint working projects completed in 2014-2015 included NHS Lanarkshire and GSK working jointly to improve the management of chronic obstructive pulmonary disease (COPD) across North and South Lanarkshire Community Health Partnership Boundaries. Meanwhile, Epilepsy Scotland, Union Chimique Belge Pharma and GSK UK worked jointly to evaluate and subsequently improve the services for epilepsy patients in Dumfries and Galloway Health Board.

 

2. Support group: MSD

The company says that ‘some of its greatest achievements have come about through collaborative effort’. These include working with NHS North Lancashire, Ely Lilly,
Novo Nordisk and Pfizer on the Primary Care Diabetes Facilitator Project to increase management of diabetes in primary care. It also has a partnership with the London Sexual Health Programme (NHS England, London) and Bayer HealthCare on ‘Improving Choices in Contraception through Training’.

 

3. Street wise: AstraZeneca 

The company says that it is ‘committed to ensuring that AstraZeneca’s business is aligned with NHS priorities and supports delivery of excellent patient care’. It has duly undertaken over 30 joint working projects since 2009. These include collaborating with Stockport CCG to improve asthma and COPD care and reduce unplanned admissions and unwarranted variation.

  

4. Breathe easy: Teva UK

Involved in a number of joint working projects with the NHS across the country, Teva has helped with ‘Improving Asthma Outcomes’ in Ashford Clinical Commissioning Group, via a Medicines Use Review (MUR) support programme. This included inhaler technique training, MUR training and reducing asthma hospital admissions across NHS Bristol.

 

5. Roche solid: Roche

Over the last three years Roche has worked with over 25 NHS organisations on more than 28 projects. These include supporting initiatives to remodel cancer pharmacy services, helping to build whole system integrated care platforms in the South of England and alongside The Christie, in the new setting of a devolved health economy.

 

 

 

 

 

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Features

Can you really worry yourself sick?

by Amy Schofield 26. January 2017 09:15

 

 

Don’t believe the hype: health headlines dissected

 

THE STORY

Do you constantly worry that a mysterious nagging pain could be the thing that kills you? Does the receptionist in your local GP surgery recognise you by your voice when you call for an appointment? According to new research, hypochondria – agonising that something is wrong, when the evidence suggests otherwise – really could be ruining your health. Also known as the ‘worried well’, people who constantly stress out about phantom illnesses are more likely to develop heart disease than those who are confident that they remain in rude health.

 

THE RESEARCH

Researchers at the University of Bergen in Norway examined health data from more than 7000 people born in Norway in the 1950s. The anxiety levels of participants were measured using a standard questionnaire, while their heart health was tracked using national data on hospital treatment for heart conditions. The purpose of the study wasn’t to establish whether anxiety over health caused heart disease later in life but, rather, if there was a correlation between the two. The study was published in the BMJ Open.

 

THE RESULTS

The researchers found that during the 10–year follow-up period, twice the number of people who scored highly on the anxiety tests went on to develop heart disease (6.1%), compared to those who weren’t anxious about their health (3%), even when other risk factors – such as diet and smoking – were taken into account. Once the results were adjusted for risk factors, analysis showed that those with health anxiety at the start of the study were found to be 73% more likely to develop heart disease than those who weren’t. Curiously, the effect was also found to be more evident in men than women.

 

THE DEAL

Although the results of the study showed that there was a link between health anxiety and heart disease, the researchers could not establish exactly why. This was because those with anxiety were likely to have other mental health issues, which could also contribute to coronary heart disease. The study authors said: “This finding corroborates and extends the understanding of anxiety in various forms as a risk factor for heart disease.” So, although health anxiety wasn’t found to be the single cause of heart disease, you clearly can worry yourself sick.

 

What the press said:

‘”Worried well” make themselves sick’ The Telegraph; ‘Hypochondriacs more likely to develop heart disease, study finds’ The Independent; ‘Why it’s no surprise that hypochondriacs get more heart disease’ Spectator.co.uk   

 

I told you I was ill

Hypochondriac comes from the Greek word hypokhondria, which literally means ‘under the cartilage (of the breastbone)’

Famous hypochondriacs include Charles Darwin, Florence Nightingale and Andy Warhol

After a performance of his play, ‘The Hypochondriac’, Molière passed out on stage and died a few days later

 

 

 

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Features

Knowing me, knowing you: Meet the MSLs

by John Pinching 20. January 2017 10:13

 


In the ranks of pharma and the NHS there are people that speak the same language

 

In the curious ‘no man’s land’ that exists between industry and the NHS, Medical Scientific Liaisons (MSLs) break bread with healthcare professionals; conversing in a common vernacular, and maybe sharing the odd science-based joke.

This is a language that only they understand. Indeed, increasingly, industry views MSLs as the key to engendering trust and delivering on the promise of transparency.

No longer simply a loyal foot soldier – the MSL is leading the charge. A few pioneering pharma companies are instigating this remarkable rise – harnessing a passion for science and utilising an ability to communicate vital messages about life-changing products.

Motivated only by medical research, exciting therapy development and making a difference, MSLs are, perhaps, the future of pharma itself.

 

 

MSL in profile

 

Camila Marotta, Chugai Pharma UK

The role

As part of the Medical Affairs team, MSLs are the bridge between the pharmaceutical company and healthcare professionals – facilitating the exchange of unbiased medical and scientific information. We work throughout a product’s lifecycle, and pre-licence activities can include advanced budgetary notification to payors, medical educational meetings and advisory boards. We can also assist in formulary applications and investigator’s initiated trials. The primary objective of the MSL is to establish and sustain peer-to-peer relationships with therapy area experts at major hospitals and
academic institutions.

 

The difference

At Chugai Pharma UK we all have the patients’ interests at heart and are regularly reminded of why we do what we do. We believe that continual innovation, investment in research and partnerships, are the key drivers in targeting difficult-to-treat conditions and improving quality of life. As MSLs, we are at the forefront of sharing the clinical trial data, ensuring that clinicians have the information they need in order to make the right prescribing decision.

 

The reward

Medical educational meetings are one of the most rewarding parts of the role. I truly enjoy presenting and engaging on a relevant disease area and providing up-to-date information and support. We are currently working on delivering a series of meetings in the area of cancer cachexia, which is a very challenging and mostly undiagnosed condition.

 

The change

The pharmaceutical market is changing to accommodate the increase in personalised medicine, immunotherapy and fluctuating NHS budgets. There is great competition in the biopharma industry and, consequently, we need to be working in compliant collaboration with our internal partners, and to
the highest of standards.

 

The future

My personal ambition is to keep developing as an MSL – there’s always room to learn and develop. Aiming to be the best I can be at my job means that I’ll be delivering an improved service to my customers. I’m looking forward to being part of my first product launch as an MSL next year. Chugai Pharma UK has an exciting pipeline and 2017 promises to be a memorable year for all of us.

Go to chugai.co.uk

 

 

Steve Patmore, Janssen

The role

At Janssen UK, the MSL function represents the medical department of the company. As an MSL, I interact peer-to-peer with healthcare professionals; supporting education and facilitating the exchange of up-to-date scientific knowledge on new and current Janssen products, ensuring the best outcomes for patients.

 

The difference

As an MSL, I have a deep-seated responsibility to healthcare professionals, and the patients who come under their care. By ensuring that we build strong, ethical relationships with clinicians and provide the highest quality of education and service, we are in the best position to make a positive difference to the lives of patients. We support initiatives such as investigator-initiated studies and real world evidence data collection, and this research has the potential to enhance how treatments work, improve clinical decision making and, ultimately, transform patient care.

 

The reward

Peer-to-peer conversations with clinicians are really fulfilling – taking time to engage with them and understand their interests and thinking. The quality of these interactions – together with the information and education provided by Janssen – has resulted in increased engagement and a strong belief among clinicians in the value we offer. Being able to further support the clinicians I work with in their ongoing education, or within their appraisals, is also very rewarding.

 

The change

The MSL role is changing – expectation is no longer just on data delivery. I have become more heavily involved in projects which gather insights from internal and external partners, enhancing the quality of interactions with healthcare professionals. By recognising our strengths and demonstrating that we are willing to listen, the role develops in line with the needs of people we serve. From a clinician’s perspective, I believe they are looking for more from pharma companies – they value the clinical conversations that go beyond mere translation of data, and are interested in the evaluation of real world evidence and health outcomes.

 

The future

As the lead on customer feedback projects within Janssen diabetes, I am looking forward to evaluating responses. This will be the first time we have had the opportunity to know what our customers think and this supports us in realising our aspiration of being the best. In terms of my own education I am looking to completing a virtual diabetes course at the University of Copenhagen. My other interest is in ‘critical thinking’ and I’ll be looking to develop this in 2017.

Go to janssen.com

 

 

 

 

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Features

Patients please: The ‘missing link’ between industry and healthcare

by John Pinching 17. January 2017 09:03

 

 

The ‘missing link’ between industry and healthcare provision has arrived (and they mean business).

Not so long ago your GP was the all-seeing, all-knowing, god-like figure, with your healthcare record in their filing cabinet. Patients would live for decades with a condition they knew nothing whatsoever about – their life and, indeed, death had been obediently handed over to the healthcare profession.

A lack of input from patients – the very people for whom pharma and the NHS exist – has, over several decades, created a power vacuum and it has taken an entire digital revolution for ‘the patient’ to occupy that void.

Recognising that there has been cultural shift, a few buzz terms – designed to create solidarity between industry and the patient community – have emerged, such as ‘patient centricity’ and, the utterly vacuous, ‘focussing on the end user’. This was well-meaning enough, but, until relatively recently, patient presence at healthcare-driven events has been practically non-existent and, for those patients willing to provide personal data and assist with research, experiences have been mixed.

Meanwhile, the online patient voice has grown in decibels – to the extent that it can no longer be ignored. The rise has developed through shared experience, support networks and, above all, challenging the medical profession. This, in turn, has seeped offline and into society – the patient has come in from the cold.

People want to know about their condition, people want to manage their illnesses and they want better therapies and apps to enable them to do it. The patient voice is here and it’s getting much louder.

 

Here’s to you, Nick Robinson

The BBC’s former Political Editor, Nick Robinson – a self-confessed workaholic – was diagnosed with a rare form of lung cancer in 2015.

At the ABPI’s Patient’s First conference he appeared as the de facto ‘celebrity patient’ and was brilliantly candid about his experiences. “It’s been a curious public journey”, he confessed. “And, yes, being in the public eye, you do get more attention and support.”

He was brutally honest about the reality of illness and the fragility of life itself. “You’re not in control, your body is – but we can control how we react. We head straight for the internet, and it’s almost always alarming. Shut the page!”

Nick went on to talk about how it wasn’t death that worried him, but the fear that someone might know something that they weren’t telling him. He said that he was far happier when he discovered that the doctor didn’t know the outcome. When he realised that Nick was fine with that, the doctor was “much more open about uncertainty.”

He urged us, as patients, to use our voices. After a wretched first stage of chemo, Nick told the nurse it had been dreadful, and was given a different cocktail next time.

He also set himself a personal goal – to return to his television duties on election night. “That was my Mount Everest,” he said. And return he did.

“You can never put patients first enough,” he concluded.

Nick Robinson has recovered and currently hosts Radio 4’s Today programme.

 

 

Top talk

Memorable quotes from the ABPI’s inaugural Patients First conference

 

“Once you’ve invited us to the party, don’t exclude us, and talk to us in a language we understand.”

 Jane Taylor, Chair of Patient Insight Group, Arthritis Research UK

 

“Patient research must be in the community – empower people by explaining research outcomes.” 

Dr Doug Brown, Director of Research and Development, Alzheimer’s Society

 

“Patient data is at the core of innovation; experience of living with a condition shapes new treatments.”

Nicola Blackwood MP, Parliamentary Under Secretary of State for Public Health and Innovation

 

“Research must be demystified. Take away the white coat and test tubes, and change the language.” 

Angela King, Patient Advocacy Lead, Novartis

 

“Conditions affect society – not just one person. It’s about changing mindsets and improving quality of life.” 

Keith Wilson, Patient Research Ambassador

 

“Before starting chemo, I was told you could travel on the tube afterwards – you can’t! Patients are the experts.” 

Professor Trisha Greenhalgh, Professor of Primary Care Health Services, University of Oxford

 

 

View from the expert

Over the last few years, the patient voice has become more confident, more educated and more important. The digital revolution has led to increased access to information, and a brave new world of healthcare has emerged.

Discussion forums, Twitter, Facebook, Instagram and many others provide patients with a platform to openly discuss health concerns, research their condition and share thoughts about their day-to-day lives. This has resulted in the growth of more engaged patients – and those providing healthcare have had to listen to what they’re saying.

The increasing volume of the patient voice has also coincided with the squeeze on NHS services. Four years ago the Department of Health published ‘Liberating the NHS: No Decision About Me Without Me’. It specifically targeted healthcare professionals, with the aim of providing patients with better choices and more control over their health.

Drawing on years of running product trials, and cohort patient trackers through talkhealth, feedback suggests that if patients are informed and feel more in control, commitment to their healthcare routine is higher, with better compliance.

Some 17 years ago, my own GP – who I think was ahead of his time – admitted he had run out of treatment ideas and acknowledged that I knew more about my daughter’s condition than he did! This experience repeats itself across health forums, as those battling with health issues become 'professional patients'.

In his book, The Patient Will See You Now, Eric Topol said: “We’ve learned in general that doctors don’t like smart patients. But this sort of attitude will do little to hold back a new generation of increasingly smarter patients and more supportive and smarter doctors.”

With rapid advances in technology it will be fascinating to witness the further progress of patient empowerment over the next decade.  

 

Deborah Wyatt is Founding Director of talkhealth Partnership Ltd. Go to talkhealthpartnership.com

 

 

 

 

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Features

Crystal Ball: Healthcare predictions ‘17

by Amy Schofield 8. January 2017 11:54

 

 

2016 was a year of seismic shifts, but what does 2017 have in store for pharma and healthcare?

Having reflected on a tumultuous 2016 in the last issue, Pf has assembled a team of luminaries from across the NHS, industry and politics. They have been tasked with gazing into the 2017 healthcare crystal ball and sharing their predictions. Will we be dancing in the streets or hiding behind the sofa? Let’s find out...

 

 

Dr Charles Alessi, Senior Advisor, Public Health England

“2017 will be a year of turmoil for health and care in England. This will act as the spur for long awaited changes to implement a more locally-based delivery of care where local government and health are the important players and the person – not the patient – takes centre stage.”

 

 

Therapy areas and R&D

Chris Molloy, CEO Medicines Discovery Catapult

Patient charities hold the ‘long-term’ view, and that has helped fund continuing research into cancer, heart disease, Parkinson’s, Alzheimer’s and many others.

We are building a new model for discovery: disease–based syndicates, with patient research groups as the cornerstone. Engagement with their communities is critical to target selection, validation and proof of concept.

In an industry which takes over 10 years to bring products to market we should resist the temptation to continually refocus our R&D from one disease to another. Long-term global efforts in cancer have been needed to reach the current success in product flow and survival rates.

Quite rightly there has been a societal and scientific focus on dementia, helped by the excellent leadership and research focus of Alzheimer’s UK. Rates, however, may already be at a high watermark.

On a scientific level, if we are to take on the complexity of most non-orphan diseases we must look past the one-gene, one target, one medicine approach of old.

We remain horribly weak in the war on microbial disease. If the world does not invest, the UN foresees a $100 trillion impact on the global economy in the next 50 years – we are all at risk. There are economic barriers to overcome, but more worrying is the loss of expertise in the sector. A recent survey indicated the number of active, card-carrying experts worldwide may now be less than 2000.

An agreement at G20 on re-entry incentives will spark a renaissance in long-term funding, and the influx of money from the US will be a major step forward in 2017.

 

 

Ryan Wooller, Business Development Director, Star

“2017 will be the year of pharma understanding the game-changing nature of sustainability and transformation plans (STPs). Implications could pose both a threat and an opportunity for the pharma commercial model. Pharma supporting pathways of care could rise up the customer agenda.”

 

 

EU departure

Chris Molloy, CEO Medicines Discovery Catapult

Post-Brexit, 2017 will not offer the certainty that industry needs in terms of regulation or people movement. We should accept that situation and focus on things we can do – ensuring the UK remains a fertile place to discover and improve new medicines.

The UK has considerable public assets across academia and the NHS, and a financing hub that provides 30% of all European investment in biotech. It also has a strong, high-quality CRO community that can thrive in the modern ‘virtual’ discovery model.

Combining these capabilities is key to our industrial strategy in medicines and the significant increase in recent funding for InnovateUK. The £100M refilling of the Biomedical Catalyst provides the fuel.

  

Leslie Galloway, Chairman, Ethical Medicines Industry Group (EMIG)

We mustn’t judge the Government’s performance on a daily or weekly basis. Much of what is really happening will be behind closed doors and many compromises will be reached.

The messages that we need Government to receive are: 52% of people may have voted to leave the EU but many more, if asked, would have voted for a stronger economy that will support healthcare, education, law and order and living standards.

Having a vibrant economy is vital for any political party and the pharma industry should be at the forefront of any industrial strategy, because we don’t just deliver prosperity to the UK, we help deliver some of the best healthcare in the world.

We should retain as many of the benefits of EU membership as we can – the single market and access to the right people. We also need to focus on the opportunities that we can exploit with the Medicines and Healthcare Products Regulatory Agency and how we can become a global centre for research.

We have the opportunity to drop Corporation Tax to 10%, to attract international investment. If global companies are to invest in UK healthcare we need an NHS that is properly funded and a New Medicines Fund which delivers our new medicines to patients.

The UK – at 3% of the global market – may suddenly be perceived as a minnow and, if we have to develop a separate regulatory approval system, it could drop us down the ‘ladder’ of global pharma priorities.

 

 

Health and social care

Helen McKenna, Senior Policy Advisor, The King’s Fund

2017 promises to be a pivotal year for health and social care. NHS finances will continue to be a major concern – the Autumn Statement confirmed the NHS settlement set out in the last Spending Review, which means that 2017 will usher in three years of very little growth in the health budget.

Health leaders will be expected to get NHS performance back on track in 2017 – but this will be  tough. At the same time that budgets are squeezed, many NHS services are struggling to maintain their operational performance.

The latest NHS statistics show that services are under huge pressure and often failing to meet key targets, including the four–hour A&E and 18–week referral-to-treatment targets.

Demand for services keeps rising – the number of A&E attendances and emergency admissions to hospital are increasing rapidly. This increases the strain on services, with almost 11% of patients now spending more than four hours waiting in emergency departments. General practice, mental health and community services also remain under huge pressure.

There will be continuing calls on the government to identify a long–term solutions to social care funding. The social care sector is in a critical state – fewer people are able to access the care they need, delayed discharges from hospital are at record levels and there are deeply worrying warnings about the fragility of some large care providers. To find extra money, there will be a need to put social care funding on a sustainable footing for the future.

Although 2017 offers plenty of challenges, there are also some important opportunities. The new models of care being developed, in response to the NHS Five Year Forward View, along with the work being undertaken to deliver Sustainability and Transformation Plans, offer significant potential.

 

 

The political sphere

Alex Ledger, Deputy Managing Director at Decideum

2017 offers one unique opportunity for pharma – the chance for industry to work with Government to develop a new industrial strategy for Britain.

It goes without saying that Brexit has changed everything. The stakes have never been higher. The health of the UK economy is intrinsically linked to the success of its highly-skilled industry sectors and life sciences is the cornerstone of this, employing around 175,000 people, and with a £51bn turnover in 2015.

The UK wants to go toe-to-toe with the big US life sciences hubs in Boston and the Bay area on the West Coast. To do this – in a world unfettered by the regulations of the European Union – it must convince the global pharmaceutical industry that, in spite of potential barriers to accessing the European market, the UK offers unparalleled attractions, a world class research infrastructure and an innovation-open NHS, worthy of investment.

Q1 of 2017 will see a hive of activity on this strategy – coordinated jointly by the Secretaries of State for Health and for Business, and via the Office for Life Sciences. Indeed, some of this work is already underway and life sciences has been earmarked as one of the subjects which will form the Government’s overall post-Brexit plan.

Pharma has a rare chance to join together as an industry, look beyond marketplace competitiveness and provide the UK with the best prospect of competing independently on the global stage.

 

 

Robert Taylor, Head of Europe, Commercial Solutions, Quintiles IMS

“2017 will be a year of broadening the use of technology to support the sales process and the on–going emergence of the multichannel sales model. While the ‘human channel’ remains the cornerstone, interest in digital and remote engagement continues to grow, and demand for efficient commercial solutions which leverage different channels is increasing.” 

 

 

 

Primary care

Dr Anne Connolly, GP and Chair, Primary Care Women’s Health Forum

The main challenges will be coping with the fall out of local authority (LA) funding cuts. Delayed discharges, cancelled operations, higher emergency admissions and poorer community care are happening because of cuts in community placements, social support and staff in LA commissioned services, such as health visitors, school nurses and youth workers.

Other challenges include increasing demand and the poorer health of the population. Ageing and chronic long-term frailty problems, obesity and the link with metabolic syndrome, cardiovascular disease and cancers, mean that the self-care agenda will need to be prominent. There will be a push from GPs for patients to buy their own over-the-counter medicines and use online resources, pharmacists and other allied healthcare professionals before going to their GP or A&E.

All clinical commissioning groups are having to make cost efficiency savings, so more will want to make decisions about QIPP (Quality, Innovation, Productivity and Prevention) savings.

As GP practices develop into federations there will be a push for care closer to home, some care delivered by AQP (Any Qualified Provider) and better use of technology. The extended hours developments will need GP practices to work closer together to make sure that care can be delivered by primary care for longer hours.

Hospitals are under increasing pressure to reduce planned admissions and surgery as they struggle to cope with the extra unplanned and emergency work.

 

 

Peter Rutherford, Vice President Integrated Market Access, EMEA and Emerging Markets, Quintiles IMS

“2017 will be a year of increased focus on patient access requirements, as the need for scientific communications throughout the product lifecycle, and the numbers of complex new products requiring integrated patient support programs, continues to grow.”

 

 

The digital revolution

Dr Farzad Entikabi, GP and founder of Doctor Care Anywhere

The NHS is one of the most clinically advanced health services in the world, but the sector needs to implement innovation to find opportunities for improvement, as it faces the pressures of reduced budgets, rising demand and an ageing population.

Primary healthcare is one of the most strained areas of the NHS, with 60 million more consultations a year required compared to five years ago, and waiting times predicted to rise next year, from just under two weeks, to 17 days. Our recent research with YouGov found that due to the barriers of accessing a GP, 3.3million people have missed or put off seeing a GP, risking their longer–term health, and potentially costing the NHS more.

It is becoming clear that our primary healthcare services are stretched to breaking point and that, along with appropriate funding, innovation is also needed.

Technology – and specifically telehealth – is already offering solutions to these concerns, not only in terms of the diagnosis, monitoring and treatment of illnesses, but also in the way patients access healthcare. Indeed, 70% of GP appointments can be conducted via video or phone, and the next few years will see a significant change in how we access primary healthcare, with virtual GPs providing a quick, reliable and flexible healthcare service to a greater number of people.

Digital innovation is fuelling extraordinary developments in healthcare and will be a critical force in ensuring that existing health issues do not escalate into more significant problems.

 

 

Nick Lavery, Co–Founder & Managing Director, Republic M!

“2017 will be a year of growth for healthcare with continued market access pressure and greater competition. Return on investment will become increasingly important and the industry will accelerate adoption of innovative promotional and educational channels. This multi-channel approach will be integrated across the promotional mix to drive profitability.”

 

 

 

Clinical development

Divya Chadha Manek, Head of Business Development (Commercial), National Institute for Health Research (NIHR)

The NIHR Clinical Research Network predicts that the strapline for clinical development in 2017 will be ‘collaborate, collaborate, collaborate’.

2016 was a year dominated by mergers and acquisitions within the life sciences Industry. M&As are not a new thing within the sector, however, it is becoming apparent that for a company to be successful, there needs to be a shift in its approach to developing medicines for ‘tomorrow’s world’.

This move towards more open ways of working through strategic partnerships – spanning healthcare, academia, life sciences industry, the charitable sector and patient organisations – is gathering momentum. Mirroring the growing trend for outsourcing drug discovery, new and innovative collaborative models are emerging with the aim of accelerating medicines development.

Collaborations take many forms and bring many benefits. We are now seeing charities collaborating with the life sciences industry on multiple levels, allowing them to work in new ways and bring benefits to patients. Lab–based scientists and academics are coming together with clinical researchers, enabling them to share ideas and resources, driving forward drug discovery.

Similarly, life science companies are forming alliances with research delivery organisations and the NHS to optimise early phase testing of potential pharmaceutical products to expand their research and development programme.

Universities are joining forces to harness big data and find ways to support the safe use of patient data for medical research, while patient organisations are promoting initiatives to help finance generic drug trials for rare diseases.

The NIHR Clinical Research Network predicts more exciting collaborations. We often use the catch line: ‘The NHS is open for business’, but perhaps it’s time to say – ‘we are not just open for business, we are open for innovative approaches on how we do business.”   


 

 

 

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Features

Aimee Carr, 26, on living with two chronic conditions

by John Pinching 5. January 2017 14:55

The first of a unique series of interviews in which patients share their experiences - in their own words

 

Please tell us about you and your condition.

My name is Aimee Carr and I am 26 years old. I have been diagnosed with severe fibromyalgia and chronic fatigue syndrome. I am currently housebound most of the time and occasionally manage to go out for a few hours if a family member can take me out in the wheelchair.

 

What treatment or therapy do you use? 

Currently I am on a lot of medication and have tried many different therapies such as lidocaine infusions. Nothing is successful at the moment, but I am hoping to try more options as they become available.

 

What impact has it made on your life?

It has completely turned my life upside down. I went from being a girl who works 45 hours-a-week, two jobs and training for 5k runs, to not being able to leave the house or walk further than my car with a crutch. Training and hiking are my favourite things to do - I used to power through the pain, but now that it is so severe, and coupled with the fatigue, I can't do any of it anymore. People treat you differently when you're disabled, they stare when you pull up in a disabled parking bay. It makes you feel like everyone is living their lives, while you are left behind. My husband goes to work and out with his friends, while I am sat alone in the house every day - it makes you feel very insecure.

 

Is adherence - sticking with your treatment regime - a challenge?

I have overdosed with medication accidentally, because I have forgotten when I've taken them, so I now have a medibox. This is filled by a pharmacist and it shows me when I need to take my next meds.

 

What side effects, if any, do you have to manage?

I have side effects such as constipation and migraines from my pain medications. I have to take other tablets to manage those alongside my main meds.

 

Are you getting enough information about what medicine you take?

Yes, all of the medications I try are fully explained to me by my GP and specialist doctors.

 

Are you looking for an improved treatment?

I still haven't found any treatments that have improved my circumstances, so I am always hopeful that there will be more effective treatments available soon.

 

Do you think that the pharma industry listens to you?

Yes and no. When you get someone who is very understanding, it's brilliant, but if you get someone who doesn't really understand your condition, it can be very upsetting.

 

How would you like to see communication with drug manufacturers improve?

It would be good if they set up surveys or interviews, like this one, which could be sent to people who use their medications regularly. They could then act on the feedback about treatment side effects or effectiveness.

 

Are you feeling positive about the future?

At the moment, no. Previously I've been very positive but, unfortunately, I am getting to a point where there isn't much more for me to try.

 

‘The Patient Voice’ interviews are a collaboration between Pf Magazine and talkhealth.

talkhealth is one of the leading online health communities in the UK, providing free information and support to those with chronic health conditions; whilst collaborating with pharmaceutical and healthcare companies, charities and medical professionals to develop sustainable health programmes and solutions.

For advice and support go to ukfibromyalgia.com

 

 

 

 

 

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Features

What's your favourite Pf Magazine cover?

by Hazel Lodge 3. January 2017 11:40

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Features

Is pharma finally catching up with the future?

by Amy Schofield 22. December 2016 09:37

 


When it comes to science, pharma has left many other industries in the dust – but ‘digital’ has never been a straightforward bedfellow. Now, however, distinct silicon valleys are emerging in the terrain of pharma, and digital is no longer on the horizon – it’s here. 

 

Cloud cover 

David Bennett – Vice President of Strategy for Veeva Systems – on Sanofi Pasteur MSD’s transformative journey to cloud marketing  

More than ever, companies are putting the customer squarely at the centre. Engaging with them quickly and relevantly through digital channels is the new imperative – but achieving global brand alignment is a huge challenge for pharma. 

Almost three years ago, Sanofi Pasteur MSD embarked on that perilous journey and – with three products to launch – it incorporated new digital channels in the quest to maximise customer engagement. As a company entirely dedicated to vaccines – with nearly 1000 employees, across 19 countries – it realised the magnitude of the task, but the results were still greater than expected.  

“Our 2013 product launches were critical for the company,” explained Alexandre Gultzgoff, Sanofi Pasteur MSD’s deputy director of IT. “We searched for a modern platform that would enable a digital transformation and improve compliance quickly.” 

The company chose a leading cloud-based multi-channel solution – fully integrated across email, face-to-face and web. Subsequently, the company’s sales representatives immediately began sending emails directly from the system to customers and personally engaging with healthcare professionals via interactive web presentations. Indeed, field teams and brand managers embraced it so quickly that the company tripled expected adoption rates, six months ahead of forecasts.  

Over time, however, a pattern began to surface – after six to seven weeks, engagement would drop off. “It became very clear that we needed to change content much more often to keep customers engaged,” explained Gultzgoff.  

To improve the speed of content development, Sanofi Pasteur MSD took a two-pronged approach. Firstly, it sought to harmonise content, by consolidating its agency partners and harmonising content development and, secondly, looked to streamline material by adopting a cloud-based commercial content system.  

The results were remarkable – content production had become centralised, but local regions were still able to adapt it to meet specific regulatory or cultural needs.  

“The impact has been amazing,” said Gultzgoff. “We expect a return on investment in less than six months, due to content reuse alone.” 

It is now expected that the time to release commercial content will be reduced by at least one third, while medical, legal and regulatory review time will decrease by up to 50% per year. The company also projects efficiency gains of 17% in the first year, followed by a 33% annually in years two through to five.  

Furthermore, Sanofi Pasteur MSD is now looking forward to implementing a complete audit trail that puts brand owners in the driving seat, and makes them accountable for where an asset is being used and for what purpose, improving compliance in the process. 

“The next crucial step is to gain richer customer knowledge,” concluded Gultzgoff. “We can’t wait to see what else we can accomplish.”  

  

Egg timer 

Chris Knight – egg Innovation Director – on the use of digital to release the potential of instant data    

 Egg is the ‘innovation hub’ at Virgo Health, the global healthcare communications agency. egg’s mission is to develop products that make a meaningful difference to patient lives on a daily basis, while also supporting healthcare professionals and pharma. It recently launched with two proprietary white-label digital products.  

PRODIGI is a ‘Collaborative lnnovation Tool’ combining enterprise collaboration, project management and ideation technology. An early adopter of PRODIGI was Imperial College Health Partners – as part of Digital Health London it is using it to facilitate better collaborative working among practitioners in the area of atrial fibrillation. 

Meanwhile, TRIAL360 is a digital platform which optimises clinical trial efficiencies, without compromising standards. From protocol development to data milestone readouts, it provides education, resources and support. It is a pioneering example of how tech is better fulfilling the needs of investigators and – critically – patients, throughout the trial process. 

 

Keeping it real 

Nicholas Brooke - Patient Focused Medicines Development Chief Executive – on the rise of patients in the digital space 

Patient engagement is increasingly popular, but good practices aren’t being spread. Nobody has a clear picture of what initiatives are already in place, so efforts are often duplicated and resources used inefficiently. This knowledge gap makes it difficult to identify patient engagement opportunities that are relevant. 

That’s why Patient Focused Medicines Development has launched a global online tool to understand patient engagement. It digitally maps and categorises initiatives to provide much-needed structure to the landscape. Patients can search for initiatives, and healthcare stakeholders can track other projects to see where they fit. Most importantly, all users provide honest feedback on the successes and limitations of each initiative.  

Using this information, developers can easily improve their platforms, and create multi-stakeholder partnerships and working groups. All interested parties collaborate to synergise and globalise good practices, creating a pioneering framework, which takes patient involvement into the 21st century.  

The tool could mean big things for biopharmaceutical companies. Drug development is already expensive and time-consuming, so putting patient needs first ensures that the right things are prioritised and resources are not wasted. The tool will also streamline drug trials by identifying potential risks and barriers to patient participation at an early stage.  

Already, 15 biopharmaceutical companies are using the platform and sharing information on 42 different initiatives. Of course – as with any big data tool – the more it is used, the more valuable it becomes. Ultimately, we need users all over the world to participate and share their experiences.  

 

 

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