Dear colleagues
I am extremely pleased to be able to support this special patient-focused edition of the International Journal for Technology Assessment in Health Care. The voices of patients, carers, and their advocates have been part of NICE's core business since our foundation in 1999, and I am particularly pleased to see those two decades of work reflected so well in this journal edition. This special edition is, of course, a testament to the generosity of the individual people and organisations who have given their time and expertise over the years to ensure NICE and other health technology assessment (HTA) agencies keep the experience of patients at the forefront of their recommendations.
Alongside NICE's work in this area, this edition of IJTAHC showcases the widest range of activities to engage and involve patients in producing high-quality technology assessment decisions, over a wide variety of organiations and countries. These include topics, such as:
(1) Developing patient engagement strategies in countries where this is culturally unfamiliar;
(2) How engagement strategies have been improved and enhanced over the years in countries more used to this approach;
(3) The role of patients in determining research priorities for HTA; and
(4) Standardising information across agencies to support consistency of approaches.
The papers also look at cultural issues within HTA agencies to show how engagement with patients and their support organisations is viewed. They demonstrate how patients' and carers' views, experience, and expertise are invaluable in the discussion of controversial topic areas. The papers also consider the various methods and processes available to engage with patients and the importance of experience-based research in informing HTA decision making.
It bears repeating that patients and carers are the people most directly affected by HTA recommendations and so it is incumbent on those of us producing these recommendations to ensure their views and experiences are central to our decision making. This very special edition of IJTAHC highlights how this is done all over the world and, most importantly, why it matters and how it makes a difference. It is very heartening to see patients as authors in some of the papers.
My congratulations to all the authors, and to Sophie Staniszewska and Sophie Werkö for their sterling efforts in coordinating this work. This edition will be a record of the excellent work done to date and will also serve as inspiration for future developments in this exciting field.
With my very best wishes
Professor Gillian Leng
