20 years of PHG Foundation

Hilary Burton

2 October 2017

Last month we celebrated twenty years of the PHG Foundation with a wonderful Gala dinner at Trinity College. As those who attended, and many others will know, this also marks a change in the leadership of the organisation. After seven years as Director, I am delighted to say that I shall be making way for Mark Kroese, who will be leading us into our next phase.

The juncture provides an opportunity for me to reflect on our contribution to some of the positive developments to health and health services over the years.

As a policy organisation we are always working at one, or several removes from the coalface and these successes take time to become manifest. Looking back, I am struck by how often we have been at the vanguard of transformation.

In the early years we worked with Department of Health colleagues and others to shape genetics services in the UK as they began to build on the success of the first sequencing of the human genome. We helped set the framework for genetic test evaluation and contributed to the early development of the UK Genetic Testing Network – an organisation that became the bedrock of support for coordinated genetic test provision in the UK. We also led early work on genomics in mainstream medicine helping to establish the principle that the leadership for diagnosis and management of people with inherited disease would sit with mainstream specialties, for example cardiology and ophthalmology, with expert support provided by clinical genetics. This is still a very real issue and requires a major development of education in genetics during specialist training in all clinical specialties, something that still needs to be picked up strongly by the Royal Colleges.

From the start we have been involved in the policy conversations surrounding the use of whole genome sequencing in health services – writing the first comprehensive report outlining its potential (Next Steps in the Sequence) and in a series of briefing notes an accessible account for the non-scientist of the complex steps between blood test and interpreted genome. In 2015 we set out a strategy for using pathogen genome sequencing in healthcare. We have been at the forefront of discussions about how health systems should deal with secondary findings (Realising Genomics) and the importance of data sharing . Beyond genomics I am also very proud of the work we did with colleagues in inherited metabolic disease, including the systematic review work that supported their ultimately successful bid to expand the conditions included in newborn bloodspot screening.

For many people around the world the most obvious manifestation of our work is our comprehensive website. Providing commentary on developments in genomics has always been one of the fundamental commitments of the PHG Foundation. We know from external colleagues that the website, which has recently undergone a substantial makeover, continues to be source of reliable information and expert insight.

Most of all I am proud of the organisation the team has created; an extremely professional organisation that delivers the highest quality work; one that is good to work for, where people are supported to thrive and develop. Underlying this is our ethos – recruiting the best people, supporting them to work as a team and valuing each other as friends as well as colleagues. I would like to thank all my friends here for their valuable contributions.

Our mission to make science work for health requires that we interface with a wide range of external colleagues including clinicians, laboratory scientists, policy makers and academics and I am grateful for their generous support and friendship over the years. We have been particularly pleased to be members of the Cambridge Institute of Public Health and I would like to thank its Director Professor Carol Brayne for recognising the value that an independent organisation can bring to their work and including us in many of their ventures. In our external relationships we have always aimed to be generous with our time and knowledge, recognising that strong friendships and trust are vital in policy making. This trust has enabled us to challenge policies or developments as an independent organisation where others might have been accused of vested interests or biases. We are also delighted that our reputation has helped us to establish our All Party Parliamentary Group on Personalised Medicine. Chaired by MP Helen Whateley, this is an important avenue for influence.

A healthy future

I am ending my term as Director confident that PHG Foundation is in excellent shape for the future. In this future, as announced by the (then) Vice Chancellor Professor Sir Leszek Borysiewicz at our Gala Dinner, we will be working more closely with the University as an associated charity.

I am delighted that Mark Kroese, my long-term colleague and Deputy Director here at the Foundation will be the new Director, taking us forward into this new phase. Mark is unique in the UK as a public health consultant with detailed knowledge and experience of genomics in the NHS. Not only that, he is a highly respected leader within the PHG Foundation, a brilliant manager and a widely trusted colleague within the NHS and beyond.

I would like to thank our Chairman Ron Zimmern and the Trustees of PHG Foundation for giving me the opportunity to serve as Director for the last seven years and for the support and guidance they have provided. Thanks are also due to my fellow directors, Mark Kroese and Philippa Brice.

I shall be staying on - and am very excited to be leading ‘My Healthy Future’, a new project in which we will work with stakeholders to build a picture of what future health systems could look like if a wide range of digital and biomedical technologies were fully embraced – and the challenges such a system could present. Through this work we aim to help prepare the UK for the next generation of healthcare.

Once again, thanks to my colleagues, both within PHG Foundation and outside, in the UK and beyond and good luck to Mark as he leads PHG Foundation into the next phase.