Guest Blog: Lord Freyberg on the social and economic potential of healthcare data

I have sat in the House of Lords as a non-party political crossbench peer since 1995 and am in the anomalous position of being one of the 92 hereditary peers who were ‘elected’ back in 1999 to stay on until further reforms. Early on, as a recent art school graduate, I was particularly focused on campaigns within arts and heritage organisations, lobbying the government on free admission to museums (a campaign we won in 2001), and addressing inequalities within war widows’ pensions by helping restore war widows’ pensions to women who remarry.

My interest in healthcare data started around the time my sister, Annabel, was first diagnosed with mesothelioma in 2012. Her treatment involved an early use of molecular diagnostics.  There was no facility in the UK at the time to do this, so her tumour sample was sent to America, where her DNA was genotyped. The results were very revealing (that Cisplatin, the standard treatment for her condition at the time, was toxic for her) but in her case the information proved too late for her to benefit. She died the following year.

What this had demonstrated was the need to re-think how we carry out our research. The present system of trials is far too slow, too expensive and unsuited for rarer cancers, such as mesothelioma. In the seven years since Annabel’s death, I have come to realise that routine healthcare data has a crucial role to play: first, in generating life-saving breakthroughs through real-world research – for which the UK rightly has a global reputation. Second, in providing the real-time care quality assurance that will allow the NHS to make sure all patients get good quality care.

The social and economic potential of healthcare data

The healthcare data we’ve amassed over the course of the first 70 years of our NHS can, if ethically and wisely used, radically transform the treatments and technologies we will deploy to improve the health of our increasingly ageing nation.  At the same time, I want to ensure that as a nation we pioneer reinvesting the social and economic value of this data in full, such that it benefits everyone in the UK, both in their personal health and economically.

Priorities for the Government

To my mind, the Government, should define its objectives for securing the social and economic value that healthcare data has the potential to generate. It should put trust in patient demands to have their data used to full effect and regard it as unethical if it is not.  It should engage patient representative groups, clinicians, the wider public sector as well as the general public to establish the priorities for using healthcare data and reinvesting its value.  It should put in place measures to ensure data quality ‘by design’ and fund data clean-up and curation to hasten delivery of those priorities.  It should develop a framework for healthcare data sharing agreements involving NHS bodies to ensure they conform to nationally agreed standards.  And, it should also provide Trusts with access to a dedicated commercial team in order to optimise the financial value to be derived from healthcare data sharing agreements they enter into with third parties. These are the issues that I am focused on at the moment.

I have benefited enormously from the insights gained while working with Annemarie Naylor and her team at Future Care Capital, without whom my contributions in Parliament and in wider circles would be that much the poorer.

Lord Freyberg recently contributed to the 2^nd Readings of both the Trade and Medicines and Medical Devices Bills in the House of Lords, where he is engaged in moving related amendments in Grand Committee. You can read FCC’s discussion paper on harnessing the value of healthcare data and social care data.