On international collaborative data sharing and dementia. Surely “it’s good to talk”?

Plans to harvest private data from patients’ NHS files are causing a ‘crisis of public confidence’, the Royal College of GPs said this week. The professional body said it was ‘very worried’ that the public had not been properly informed about the scheme, which is due to begin this spring. Conversely, NHS managers and public health experts say the data will be used for important research and to show up poor care – and that all the data will be made anonymous. But other experts, in information security, say patients will be identifiable from their data – which will be passed on to private companies including insurance firms, and the professional regulatory code for ethics puts valid informed consent as of prime importance.  A growing number of GPs oppose the care.data scheme, and say their patients will refuse to give them information for fear it will be harvested.

In the actual Communiqué from the G8 dementia Conference, the drive of sharing of “Big Data” was formally acknowledged. In the actual webinar, there was in fact screening of a session by corporate investors on the need to minimise risk from their investments to have the regulatory framework in place to avoid concerns over international data sharing.

Big Data

Indeed, BT have taken active interest in dementia.

This eye catching headline is from the BT website:grasp:

This report cites that, “the goal of finding a treatment to cure or halt dementia by 2025 is “within our grasp”, Prime Minister David Cameron has said, as he announced a doubling in UK funding for research into the disease.”

“The London conference is expected to agree to a package of measures on international information-sharing and collaboration in research. ”

These concerns include data privacy and security, and curiously do not feature above.

But the report does not even mention BT’s own Paul Litchfield, who presented even in the G8 Summit.

Last year, leaders from MedRed and BT were invited by the White House Office of Science and Technology Policy to unveil their new collaboration, the MedRed BT Health Cloud (MBHC), at “Data to Knowledge to Action: Building New Partnerships,” an event held at the Ronald Reagan Building 1300 Pennsylvania Ave NW in Washington, DC, on November 12, 2013.

MBHC is a multiyear, transatlantic effort to make available one of the largest open health data repositories in the world. It has been recognized by the Obama Administration as a high-impact collaboration that supports the Big Data Research and Development Initiative.

Designed to meet the converging needs of the life sciences and healthcare industries, the MedRed BT Health Cloud seeks to enhance integration of U.S. public data sets, such as adverse event reporting data from the U.S. Food and Drug Administration and recently released Medicare data from the Centers for Medicare and Medicaid Services, with data from the UK’s NHS and ‘other healthcare systems’.

Data currently available through the system includes several years of deidentified population health data from England, Scotland and Wales, as well as hundreds of other U.K. and data sources. It features data such as physician encounters, acute care interventions, pharmacy history, and health outcomes data.

It is argued that integration of this data with U.S. data and the addition of advanced analytics hold great potential to help speed the development of products and practices that will advance healthcare and improve the health and well-being of people around the world.

The drive for collaboration in data sharing to find a cure for dementia, most agree, is  a worthy policy concern, but so is the current lack of openness in clinical data sharing which has brought about an overwhelming feeling of avoidable mistrust in the public.

The ultimate goal is the use of genomic DNA information for the development of personalised medicine.

A study testing all the DNA in the genome of cancer cells, the first of its kind reported on 7 Februrdy 2014,  has identified individuals that may benefit from new treatments currently being tested in clinical trials.

Metastatic cancer – cancer that has spread from the region of the body where it first started, to other areas – is generally regarded as being incurable. In 2013, 39,620 women died from metastatic breast cancer in the US.

Progress in developing effective new chemotherapy or hormonal therapies for metastatic cancer has been slow, though there have been developments in therapies targeting specific genetic mutations in breast cancer.

We’ve all been shown Facebook adverts containing highly focused suggestions for purchases known on our known habits.

McKinseys have high hopes for the future of Big Data, indeed.

“Patients are identified to enroll in clinical trials based on more sources—for example, social media—than doctors’ visits. Furthermore, the criteria for including patients in a trial could take significantly more factors (for instance, genetic information) into account to target specific populations, thereby enabling trials that are smaller, shorter, less expensive, and more powerful.”

Of course, widespread internet access is an essential part of this technological revolution.

As regards BT, data sharing and dementia, surely it’s “good to talk” with the public who are, after all, central stakeholders?

Somebody had better tell Sid.

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