"Moonshot" cancer panel calls for US to create national research database

Top US cancer scientists have urged the Obama administration to create a national cancer database for clinicians and patients as part of a slew of recommendations presented on Wednesday by the White House-supported cancer “moonshot” panel.

Vice-president Joe Biden assembled the scientists as part of the administration’s effort to make the US the country that cures cancer “once and for all”.

The Cancer Moonshot Blue Ribbon Panel report said the recommendations, if implemented, “will transform our understanding of cancer and result in new opportunities to more effectively prevent and treat the disease”.

The ten recommendations include existing programs that need more funding – such as research to update guidelines for patient symptom control – and brand new initiatives including a human tumor database to monitor and analyze multi-dimensional cell behavior.

The panel also called for the creation of a network of databases for patients to profile their cancers and pre-register for clinical trials; the organization of a cancer immunotherapy clinical trial network; and the study and development of therapies that prevent or overcome drug resistance.

The panel also recommended initiatives to improve the understanding of a protein tied to pediatric cancers; increase monitoring and management of symptom care and treatment; support development of new testing and treatment technologies; and improve prevention and early detection.

But the funding necessary to fulfill these recommendations has not been approved by Congress despite lobbying by the Obama administration, which said it hoped to spend $ 1bn on the program.

“Congress should seize this historic opportunity – when researchers are on the brink of so many new and potentially life-saving developments in diagnostic tests and treatments – to boost funding for the NIH [National Institutes of Health] and NCI [National Cancer Institute],” said Gary Reedy, CEO of the American Cancer Society (ACS) and the not-for-profit organization’s action network, ACS CAN, in a statement.

The ACS said in January that it expects 1.6m new cancer cases to be diagnosed in 2016, the equivalent of about 4,600 new diagnoses each day.

Barack Obama announced that he had tasked Biden with leading the moonshot program in his final State of the Union address in January. The program aims to accomplish “a decade’s worth of cancer research progress in five years”.

It is a personal effort for Biden, whose son, Joseph “Beau” Biden III, died from brain cancer in 2015 at the age of 46. Last year, Biden helped secure a $ 264m increase in federal funding to the National Cancer Institute in the spending bill.

The panel report is a major step in that direction, and will be presented to the National Cancer Advisory Board on Wednesday, where it is expected to be formally accepted.

To determine the recommendations, the country’s top cancer scientists were divided into seven working groups to focus on elements like immunology and clinical trials. More than 1,600 ideas and comments were also submitted by the public.

Along with the recommendations, the panel also listed policy issues that needed to be addressed so that the recommendations could be efficiently implemented, including laws around patient privacy, the clinical trial system and insurance coverage.

Biden and Obama have acknowledged that it is unlikely cancer will be cured in the next five years, but they have said the moonshot program could create unprecedented strides in the fight against the disease.

“The key for us now is to put a lot more money into research,” Obama said in January. “If we do, I think we’re going to see some really big breakthroughs soon.”

"Moonshot" cancer panel calls for US to create national research database

Nice calls for national database for weight-loss programmes

Lifestyle weight management programmes focus on reducing calories consumed and increasing physical activity. Photograph: Dominic Lipinski/PA

A national database for lifestyle weight management programmes that have achieved positive long-term results should be set up to help combat the obesity epidemic, government advisers have said.

The National Institute for Health and Clinical Excellence (Nice) said participants in such programmes – which focus on reducing calories consumed and increasing physical activity – lose 3% of their body weight on average, which if sustained would be enough to lower the risk of type 2 diabetes and high blood pressure.

Carol Weir, guidance developer for Nice and head of service for nutrition and dietetics at Leeds Community Healthcare NHS Trust, said: “Obviously, if you need to lose weight, the more weight you lose the better, and the health benefits derive from that, but even a 3% loss, kept up long-term, is beneficial and that is why we are recommending sensible changes that can be sustained lifelong.”

The NHS recommends that obese people should aim to lose between 5% and 10% of their weight, and Nice emphasised that it was not replacing that guidance. But it said people needed encouragement and achievable goals.

It found that Rosemary Conley, Slimming World and Weight Watchers had been shown to be effective at 12 to 18 months, and said lifestyle weight management programmes were “one part of the solution”, but robust data was not available for many of them.

Gill Fine, chair of the Nice guidance group, said: “The issue is the variation in the types of programme available, and this is a real challenge for local authorities who have limited resources available when commissioning programmes. If there was a central resource that local providers could go in and see those programmes which are effective, it would help them to commission.”

The group has also published guidelines on best practice for programmes, including ensuring the tone and content of all communications.

Dr Alison Tedstone, chief nutritionist at Public Health England, said: “Elements of PHE’s work to support effective commissioning are already contributing to delivering some of the recommendations that Nice has developed. PHE is currently developing its future obesity work plan, which includes supporting local public health teams to deliver lifestyle and weight management services that meet local needs.”

Richard Welbourn, president of the British Obesity and Metabolic Surgery Society, welcomed the Nice guidance but stressed the benefits of surgical interventions. “The fact remains that significant weight loss is hard to achieve and even harder to sustain, even with the help of health professionals,” he said. “We promote the safe and effective use of surgical strategies as part of a coordinated pathway of care for people who are obese. There is compelling evidence that weight-loss surgery is clinically effective, safe and cost-effective.”

Nice is reviewing its guidance on bariatric surgery, which it currently recommends for adults with a body mass index of more than 40 who have tried but failed to lose weight using non-surgical techniques. The revised guidance is due to be published in November.

Nice calls for national database for weight-loss programmes

MyFitnessPal Starts Tracking Methods To Expand The World"s Biggest Nutrition Database

Latest hype about healthcare tech has been more than wearable fitness trackers, but an arguably much more impactful way to be healthful and shed fat is to track eating habits, something you can already do with a smartphone alone. MyFitnessPal, one of the initial mobile apps to track foods intake, is set to broaden its support to track activity too, marking a direct challenge to the software supplied by wearable products like Fitbit and Jawbone and an attempt to produce 1 of the first, complete windows into a person’s health.

MyFitnessPal says it will track fitness action via a feature referred to as Actions, and while the attribute will sync with information that comes in from wearable products like the Fitbit and Jawbone UP, it will also track steps directly by means of the iPhone 5S. The app is taking advantage of the phone’s M7 chip, which is powerful and effective adequate to continuously track action without having draining the phone’s battery.

MyFitnessPal’s founder and CEO Mike Lee, who wears a black Fitbit Flex on his wrist, hopes to make activity monitoring on his app operate with other smartphones too. He notes the obvious overlap of his app with Fitbit’s, which also tracks nutrition intake, but adds that “a good deal of people favor ours. Our consumers want to be capable to see all that information inside of our app.”

Lee has spent the final final 9 years creating up an huge sum of data based on what his much more-than 50 million registered customers contribute to the app. “We have the largest database that is ever existed of what men and women eat,” says Lee. “There’s never ever been one thing like this.”

Well being care companies and researchers have naturally come knocking at his door in a bid to gain accessibility to that data, but Lee claims to be “very protective” of it and is holding back for now. Whilst other fitness apps have open APIs for information sharing, MyFitnessPal’s is private and demands a formal partnership for that data to be unlocked.

There is an argument that as smartphones develop far more sophisticated sensors like the Samsung Galaxy S5’s finger-print sensor and heart price check, they’ll send wearable fitness trackers like the Fitbit towards obsolescence. Smartphones did the identical for in-auto navigation, following all, following the short-lived reputation of TomToms and Garmins.

Lee says it’s as well early to make a bet on form factors both way, since men and women really do not often have their phones on their bodies, and wearables have the advantage of sensors that could, more and more, measure issues like heartbeat and sweat articles at all occasions.

“The sum of information you have available to you is going to grow exponentially,” he adds. “What’s fascinating is what you can do with that data in the long term.”

Over time, Lee hopes to find a spot for his support in the healthcare area. Fitness apps and wearable units usually fit into the so-called consumerization of well being care trend, exactly where providers hope to consider a bite out of the $ two.3 trillion overall health care industry and shell out a position in that prolonged span of time amongst doctor’s visits.

Lee sees his support as an “incredibly powerful” way to bridge the data gap among consumers and their overall health care companies. A future services that ties in with healthcare “would have to be permission primarily based,” he adds, but such functions are already being mapped out and MyFitnessPal has an API that allows users to connect to specific healthcare suppliers. “We’d be interested in including a health-related companion,” he says.

That could be 1 likely route to creating money. For now, MyFitnessPal derives revenue totally from marketing ad room on its app with the help of mobile ad networks. The startup, which was bootstrapped for most of its existence till an $ 18 million funding round led by Kleiner Perkins last year, was actually profitable for a even though, Lee says. Nonetheless investments in hiring for roles like data science to boost its analytics offerings, have pushed it into the red more not too long ago.

Lee began MyFitnessPal nine years ago as a desktop app when he and his then-fiancee were striving to shed a few pounds ahead of their beach wedding ceremony. When his trainer told him to start counting his calories on paper, Lee created a world wide web application that permitted him to do it on a personal computer alternatively. The services grew to become an iPhone app in early 2009.

These days it’s 1 of many cost-free, excess weight-reduction apps that have challenged paid-for dieting stalwarts like Jenny Craig and Fat Watchers, the two of whom have suffered share drops in excess of the last year or so as a result.

A lot of of these cost-free apps, like MyFitnessPal, RunKeeper and Runtastic, cross reference information with 1 an additional via open APIs to support them scale up. More than time however, some might select to quit sharing data in a bid to create single platforms that end users go to for a holistic see of their overall health and activity. This looks to be the street MyFitnessPal is going down with its private API and now, the inclusion of steps tracking.

The app’s announcement is also interestingly timed, coming a day right after Facebook unveiled the new behind-the-scenes network that connects mobile apps by means of a user’s Facebook ID. With it, users will soon be in a position to log into apps “anonymously.”

The thought is that this will motivate more people to use Facebook as an identifier amongst third-celebration providers.

For an app like MyFitnessPal which may at some point partner up with healthcare providers, a ubiquitous ID program like Facebook’s could make that simpler. But Facebook and MyFitnessPal will want to obtain scale, and far more importantly the believe in, of users to consider that following stage.

MyFitnessPal Starts Tracking Methods To Expand The World"s Biggest Nutrition Database

Accessibility record for nationwide hospital data database to be published

Anna Bradley, chair of Healthwatch England, welcomes a move by HSCIC that is ‘vital if the public is going to have any self-confidence in care.data’. Photograph: Martin Godwin for the Guardian

Well being officials in charge of a national database for hospital records are to publish a record of each and every organisation that has had access to the information.

The Health &amp Social Care Information Centre (HSCIC) will issue a report detailing all the data it has launched and the legal basis behind individuals releases.

The move has been welcomed by well being campaigners who explained there had been some “truly large queries” raised about how medical information had been utilized.

The HSCIC has also commissioned an audit of all of the data launched by its predecessor organisation, the NHS Details Centre.

“The HSCIC is totally committed to bettering its very own transparency and engagement with the public,” Kingsley Manning, its chairman, stated. “In each reviewing the actions of the previous NHS Data Centre and publishing our very own decisions, we are encouraging public scrutiny,

“The clear rewards to sufferers of study and examination of healthcare outcomes need to drive our lawful release of data” adding, “this is why we had been designed by the Health and Social Care Act 2012.”

Anna Bradley, chairwoman of Healthwatch England, a statutory buyer physique, stated: “Understandably men and women are telling us they are concerned about how their records may possibly be employed in future.

“This is a good move by the HSCIC and completely crucial if the public is going to have any confidence in care.information.

“Hopefully, complete transparency about the previous can support the authorities draw a line in the sand and target on acquiring this correct going forward.”

The HSCIC will be concerned in the new care.information programme. It will be responsible for collating patient records from GP surgeries when the initiative comes into force later this year.

The scheme was pushed back until finally the autumn after sufferers, doctors and other skilled organisations raised concerns that they had not been given adequate time to find out about the venture.

Accessibility record for nationwide hospital data database to be published

Company linked to drug makers sought pact on access to patient records database

By extracting patient data, drug makers will be ready to know which medicines a medical doctor is prescribing and how that compares with other individuals locally. Photograph: Alamy

A organization working to access NHS prescription data on behalf of pharmaceutical firms attempted to signal a gentlemen’s agreement last yr for accessibility to the new central database of medical information on every patient in England, the Guardian has discovered.

The firm, i4Health, lobbied the new Overall health and Social Care Info Centre (HSCIC) in July 2013 for a memorandum of understanding to “ensure that requests [for patient information] from daily life sciences acquire prompt focus”, an examination of the stakeholder forums of HSCIC exhibits.

Senior NHS officials are due to seem at the parliamentary wellness pick committee on Tuesday soon after ideas to extract patient data from GP files have been place on hold final week.

A single of the important concerns is likely to be how patient privacy will be protected provided that, under the scheme, data from GP records – including children’s mental wellness diagnoses, family histories and medicines prescribed, as properly as smoking and drinking habits – would be offered to public and private analysis organisations, industrial organizations, universities and “data intermediaries”.

On Monday it emerged that an insurance society, Staple Inn Actuarial Society, mentioned it was capable to entry the hospital information of 47 million sufferers in excess of 13 many years to help it decide premiums for clients.

According to the Competitors Commission, i4Health will “offer entry to NHS prescription information”. 1 of the aims of the new company is to allow drug firms to get collectively to access health care details simpler than if they applied individually. i4Health has currently created substantial-profile appointments, hiring the HSCIC’s former chair Candy Morris as a non-executive director.

The pharmaceutical industry has championed the proposed “care.information” scheme, claiming that health-related surveillance is key to creating certain firms are obtaining the appropriate drug to the proper sufferers. Critics say the database’s true worth is as an intrusive advertising instrument.

By extracting patient data, drug makers will be in a position to know which medicines a doctor is prescribing and how that compares with other folks locally. They will also be ready to discern whether or not individuals are picking up their prescriptions and, crucially, will be ready to collect details of patients’ health-related circumstances and lab exams.

Organizations argue that the recent database utilized for investigating patient conditions, identified as the Clinical Practice Research Datalink, is incomplete and the available pharmacy prescription data does not reveal patient situations as GP records would – only the medicines they take.

Professionals warned that the public would be uncomfortable with the notion of patient information becoming utilised to sell medication. Ian Herbert, of the British Laptop Society, and a member of the committee that advises the HSCIC on customer requests, informed the Guardian: “Patient surveys demonstrate that the public get most upset when their records are utilized by business outfits for promoting or advertising merchandise. Numerous clinicians will not be satisfied about this as well.”

Below the care.information scheme, delicate medical records containing NHS numbers, date of birth, postcode, ethnicity and gender will be extracted from each and every GP surgery in England, unless sufferers opt out. Patient information will be scrubbed of some of the most obvious private identifiers – a approach recognized as pseudonymisation – but not adequate to make the info fully anonymous prior to it is offered to third parties.

“You have to keep the data quite lean if you are going to hold the threat of identification at an insignificant degree,” Herbert stated. “Once you commence accessing it in excess of time and comparing it with other datasets it swiftly gets to be quite a wealthy source of info. Then you can identify patients. That’s the danger with massive industries like pharma which have a good deal of data.”

Drugs firms deny there is a chance of patients’ personal medical files getting rifled by means of. Lawrence Berry, i4Health’s chief executive, said: “Businesses this kind of as ours use anonymised data, not identifiable confidential data, to appear for exactly where enhancements can be created to increase treatments and outcomes for individuals.”

Berry previously founded a healthcare details company, Datapharm, which is funded by 200 pharmaceutical companies. He mentioned i4Health would be a non-profit firm whose members would include drug firms.

The HSCIC confirmed that i4Health had been searching to signal a memorandum of knowing with it last 12 months to reduce delays in acquiring hold of patient data, but stated the business would not now be asking for unique therapy and would make requests like any other applicant.

Nonetheless, campaigners claim that i4Health seems to be like a front for the medication business. Phil Booth, of the patient privacy campaign group medConfidential, said: “Initial NHS England officials flat out deny they are promoting our data, even even though income alterations hands. Then they deny they promote information to insurers, but they’ve just been caught doing that.

“Now we uncover pharmaceutical organizations are queuing up behind so-called not-for-revenue front firms to spy on what capsules we consider to get far better. The complete care.information scheme is starting to search like absolutely nothing far more than a giant healthcare information-laundering machine.”

Company linked to drug makers sought pact on access to patient records database

NHS medical records database: hazards vs rewards

• The high quality of the data being degraded by the numbers of men and women who quit sharing personal details with their medical doctor

Benefits

• Individuals acquiring much better data about the risks positive aspects and side-results of medicines and treatment options

• Enhanced data on infection rates, and clinical outcomes from surgical procedure

• Detection of trends in public health – that means it could detect outbreaks of infections like measles much more rapidly, or expose links among drug treatments and unwell-results, prevents scandals such as the birth defects connected with thalidomide

• Greater access from patients to their own data

• Possibilities for app developers and internet site designers to help a vibrant marketplace location in overall health information

Source: Privacy Impact Evaluation: care.information, by NHS England

NHS medical records database: hazards vs rewards

NHS admits new health-related information database could pose privacy threat

Health researchers and personal companies will be in a position to access information from the information if they can demonstrate it will advantage patient care or enable more scientific advances.

Nevertheless, there has been a developing backlash towards the scheme with family members medical professionals and privacy campaigners raising fears that data could be misused. On Sunday night patients’ and privacy groups stated the analysis document, which specifics a host of likely dangers, “confirms some of our worst fears”.

NHS officials have repeatedly sought to assure the public that the dangers are minimal, stating that the bulk of details passed on to third parties will be anonymised or “pseudonymised” — that means it is practically extremely hard for patients to be identified.

But the chance assessment by NHS England, the physique behind the scheme, warns that individuals could be “re-identified” if database information is mixed with other information.

It says: “While there is a privacy risk that the analysts granted accessibility to these pseudonymised flows could possibly re-recognize individuals maliciously by combining the pseudonymised data with other obtainable datasets (a method recognized as a jigsaw assault) such an attack would be illegal and would be topic to sanction by the Info Commissioner’s Workplace.”

The report also warns that sufferers could endure and the all round good quality of information held could be eroded. “The extraction of individual confidential information from providers without having consent carries the threat that sufferers could get rid of believe in in the confidential nature of the well being support,” it says.

“This risk is two-fold firstly, individuals will not get optimum healthcare if they withhold details from the clinicians that are treating them and secondly, that this reduction of trust degrades the quality of data.” Those internet hosting the database want to protect its confidentiality and “guard against threats from within and outside the organisation”, the report’s authors say.

The document continues: “The risks described contain threats associated with ‘cyberspace’ this kind of as hackers attempting to access the information illegally.”

The risk evaluation emerged right after NHS statistics, uncovered more than the weekend, showed that wellness providers had been dropping or breaching the safety of two,000 patient information every single day. More than 2 million critical data breaches by the NHS have been logged given that the start off of 2011, the figures reveal, with data dumped in landfill web sites, left in shops and even offered on eBay.

Final week the Royal School of Standard Practitioners — which represents 46,000 GPs — mentioned there was a “crisis of public confidence” more than programs which have not been properly communicated to the public.

The intervention came as 5 key charities, including Mencap, the finding out disability organisation, and the Royal National Institute of Blind Men and women, accused NHS officials operating the scheme of unfair remedy of those with disabilities, who they say are much more very likely to be identified yet are less most likely to opt out, due to the fact they have not been told about it.

Nick Pickles, director of Large Brother View, questioned on Sunday night no matter whether the public had been “deliberately stored in the dark” about risks which are not explained in public data leaflets currently being sent to each home.

He stated: “Medical data hold some of our most delicate info and the threat to people’s privacy of them being maliciously stolen or re-recognized have to not be underestimated. From blackmailers to analysis firms, the worth could be considerable.” Fears have been raised information could be utilised by healthcare firms to target the sale of items or could fall into the hands of insurers. Roger Goss, from Patient Concern, mentioned: “This document confirms every little thing we have warned about — the human expense of placing all patients’ health-related historical past into this database is possibly disastrous.”

The Privacy Influence Assessment by NHS England suggests that the hazards of hacking and identification of sufferers should be mitigated by safeguards to manage the use of the data. Tim Kelsey, nationwide director for individuals and information at NHS England, stated: “The Privacy Influence Evaluation is a dwell document, which will be constantly updated as our drive for better data continues, and as we continue our conversations with the public about how the NHS employs data.

“On legal troubles this kind of as risks of hacking and information misuse by folks, the document sets out plainly the substantial-level technical and contractual safeguards towards them. On ethical problems like patient believe in in the system, the document exhibits we have pledged to ensure public awareness of the scheme, its rewards, its hazards, and patients’ rights to register objection.”

NHS admits new health-related information database could pose privacy threat

Q&A on NHS database

The venture will see data extracted from all NHS health care information and held in 1 centre. Health care charities say the shared information will advance healthcare science, bringing much better knowing of illnesses and treatment options and quicker detection of drug side-effects and outbreaks of disease.

Some of the data will be accessible to third parties, such as drug and insurance businesses. Some privacy campaigners concern this kind of companies will be able to use the data to target individuals. NHS officials say that third events will require to be able to present that they are looking for the data for a function that rewards patient care.

What is the protection for patients?

All details which is freely offered to the public will be entirely anonymous. Other data will be “pseudo-anonymised” – that means that it would be challenging, but in some cases might not be impossible to function out who the individual was. Information which identifies patients would only be disclosed to organisations if there was a extremely strong public interest, this kind of as prevention of an epidemic, officials say.

Can I opt out?

Partially. You can refuse to let data held by your GP which could recognize you getting placed in the program. You cannot stop the use of data held by GPs which does not identify you, nor information supplied by hospitals.

Q&A on NHS database

EU proposals could outlaw giant NHS database

Researchers and major health-related charities say the digital storage of mass data will advance medical science, assisting them understand the causes of ailment, spot side-results to new medication and detect outbreaks of infectious illnesses.

Privacy campaigners claim that men and women could be identified by drugs and insurance firms who could use info to target items and profit from people’s illnesses, though officials say this would not be permitted.

Underneath the scheme, patients’ data will be automatically uploaded into the care.data system unless of course an personal chooses to opt out.

Board papers drawn up by Department of Wellness (DoH) officials warn that proposed EU laws to harmonise rules on information protection would not enable such a program – due to the fact they state that men and women must give explicit consent, realizing the distinct purpose for which information is becoming employed.

The paper drawn up by Peter Knight, DoH deputy director of research, details and intelligence, says ministers are now negotiating with member states in Europe because of their worries.

Pamela Forde, data safety officer for the Royal University of Physicians, explained the changes would not only suggest the axing of the database, but would kill off most main research on illness. She mentioned: “The modifications currently being proposed are truly far-reaching and would indicate a lot of large scale analysis would be impossible.”

The Ministry of Defence is major negotiations on the information protection legislation, and ministers have presently expressed concern that present proposals create also a lot bureaucracy and place also substantial a burden on companies.

A spokesman for the Department of Wellness explained: “We are entirely aware of the adverse influence this would have both on care.information and on United kingdom analysis and we are functioning with the Ministry of Justice to negotiate changes.”

EU proposals could outlaw giant NHS database