Since being declared a pandemic earlier this month, swine flu has continued to cause concern for many people across the world, not least those in high risk groups such as people with diabetes.

Now renamed influenza A(H1N1), swine flu is a respiratory disease that could lead to complications such as bronchitis and pneumonia. It has some elements of a virus found in pigs but cannot be transferred from pigs to humans. Swine flu has now been confirmed in a number of countries and is spreading from human to human by droplet infection when sneezing or coughing. The number of new confirmed cases is rising steadily.

Everyone could be at risk

Influenza A(H1N1) is a new virus, so the flu vaccination given each year does not give protection. Everyone could be at risk of catching it, including previously healthy adults. Stocks of antivirals are being increased and are effective if taken within 24 hours of symptoms developing.

How to protect yourself

The best way to protect yourself and stop the spread of the disease is by using and disposing of tissues when sneezing or coughing and washing your hands as soon as possible afterwards.

The Department of Health has been encouraging people to ‘catch it, bin it, kill it’. Also try to avoid close contact with people who appear unwell and who have fever and cough. Face masks don’t protect people from becoming infected.

People with diabetes at higher risk of flu

“People with diabetes are a high risk group when it comes to getting flu,” said Caroline Butler, Care Advisor at Diabetes UK.

“Having flu can really upset diabetes control and cause blood glucose levels to fluctuate. This can leave people with diabetes open to many health problems, including complications of flu such as pneumonia and bronchitis.”

Patients across the country are voicing a growing desire for greater engagement in, and control over, their own medical care. A new study led by Beth Israel Deaconess Medical Center (BIDMC) will examine the impact of adding new layer of openness to a traditionally one-sided element of the doctor-patient relationship - the notes from patients’ doctors’ visits.

Funded through a $1.4 million grant from the Robert Wood Johnson Foundation (RWJF) Pioneer Portfolio, the 12-month OpenNotes© Project will bring together approximately 100 primary care physicians and 25,000 patients to evaluate the impact on both patients and physicians of sharing the comments and observations made by physicians after each patient encounter. Physicians and patients at Geisinger Health Systems in Pennsylvania and Harborview Medical Center in Seattle will also participate in the 12-month trial.

“Patients remember precious little about what happens in the doctor’s office,” says Tom Delbanco, MD, a primary care physician at BIDMC and the Richard and Florence Koplow-James Tullis Professor of General Medicine and Primary Care at Harvard Medical School. “We expect OpenNotes© will improve patient recall, help patients take more charge of their care, and offer an opportunity for avoiding potential medical errors as patients and families monitor and think about their care in a much more active and knowledgeable way.”

That premise is based in part on a recent study by Delbanco and Jan Walker, RN, MBA, Instructor in Medicine in the Division of General Medicine and Primary Care at BIDMC and Harvard Medical School. Reporting in the Journal of General Internal Medicine (JGIM), Delbanco and Walker found that consumers want full access to all of their medical records and are willing to make some privacy concessions in the interest of making their medical records completely transparent.

The study also found that, going forward, consumers fully expect that computers will play a major role in their medical care, even substituting for face-to-face doctor visits.

“We learned that, for the most part, patients are very comfortable with the idea of computers playing a central role in their care,” Walker says. In fact, patients said they not only want computers to bring them customized medical information, they fully expect that in the future they will be able to rely on electronic technology for many routine medical issues, she says.

“Doctors have strong differences of opinion about this, but there is almost a religious character to the debate - it’s uniformed by evidence,” says Stephen Downs, an assistant vice president at RWJF and member of the foundation’s Pioneer Portfolio, which supports innovative ideas and projects that may lead to important breakthroughs in health and health care. “It’s a subtle change - but it could reposition notes to be for the patient instead of about the patient, which might have a powerful impact on the doctor-patient relationship and, in the long run, lead to better care.”

To collect evidence, physicians and patients will fully share, through a simple one-step intervention, all encounter notes. By contrasting the experience of trial participants with unenrolled physicians and patients, the researchers hope measure the impact of notes access through online surveys of both doctors and patients.

“While this intervention potentially could disrupt the current flow of primary health care, it holds considerable potential to transform the doctor-patient relationship,” says Delbanco. “By enabling patients to read their clinicians’ notes, OpenNotes© may break down an important wall that currently separates patients from those who care for them. It may promote insight and shared decision-making by bringing closer together the unique expertise of the clinician and the unique understanding of himself or herself that each patient possesses.”

The private gene testing industry must be more tightly regulated, peers say.

The House of Lords Science and Technology Committee said a code of conduct was needed to stop bogus claims being made.

The report also said the tests, which predict the risk of disease later in life, needed to be more thoroughly reviewed before being marketed.

But the unequal provision of services in the NHS was criticised as well. Experts welcomed the report.

The completion of the human genome map in 2000 has led to a boom in genetic research and services.

Until then, much of the focus was on single-gene disorders, such as Huntingdon’s and cystic fibrosis.

But the breakthrough led to the possibility of new and better screening and treatment for a range of more complex disorders.

We must act now to prepare the health service and the public to gain maximum benefits from genomic medicine

Sir Mark Walport
Wellcome Trust

Health firms have already started to exploit the issue by offering genetic testing, which can give people an idea of the risk they face of getting a range of diseases from heart disease to Alzheimer’s.

The committee said it was concerned that unproven claims were being made and that individuals were not being offered the proper support and counselling to understand and cope with the results.

It said a voluntary code should be introduced to improve standards - official regulators are powerless to act as many of the companies offering such tests are based outside the UK and sell their services over the internet.

The peers said the EU could also re-classify genetic testing from low to medium risk to reflect the psychological impact the results can have.

This would mean they would be subject to more through pre-market reviews.

It also said mainstream NHS staff outside specialist genetic departments needed more training to help them deal with the “increasing demands” being placed on them by people worried about test results.

But the committee also said there was unequal access to genetic services provided by the NHS.

Genetic testing and subsequent treatment is already available for a range of disorders, such as breast cancer, as well as to work out which drugs an individual responds best to.

The report said individual trusts needed more help to develop and set up specialist genetic services as the issue was only going to become more pressing in the future.

‘Blueprint’

Lord Patel, chairman of the report, said it was essential for the government to produce a new policy paper on the issue as the last was six years ago and was now out-of-date.

He added: “It is an ever-developing technology that presents both challenges and exciting opportunities.”

Sir Mark Walport, director of the Wellcome Trust, said the report offered a “much-needed blueprint” for the future.

“We must act now to prepare the health service and the public to gain maximum benefits from genomic medicine.”

The call for better regulation of the private testing market was even welcomed by firms working in the industry.

Brian Whitley, founder of GeneticHealth, a UK company which offers genetic testing but does not sell over the internet, said he was “very much” in support of better regulation.

“It is completely wrong to give people results without offering counselling.”

A spokeswoman for the Department of Health said the government was fully-committed to “harnessing the potential” of genetic testing and research.

“We will carefully consider the recommendations before formally responding.”