This article was provided by Australian Centre for VBHC Advisory Group member Professor Christobel Saunders AO, MB BS, FRCS, FRACS, FAAHMS.
Christobel is one of Australia’s most prominent research-orientated cancer surgeons. She is a member of the ICHOM expert clinical advisory group and was the chair of the working group responsible for the development of the ICHOM breast cancer set in 2016. Christobel is the current James Stewart Chair of Surgery at the Royal Melbourne Hospital and Director of Medical Research at Melbourne Medical School, the University of Melbourne.
Measuring the outcomes that matter to patients is at the heart of Value-Based Health Care (VBHC). To operationalise this endeavour the International Consortium for Health Outcomes Measurement (ICHOM) was set up in 2012 by Michael Porter of Harvard Business School, Stefan Larsson of Boston Consulting Group, and Martin Ingvar of the Karolinska Institutet. This was envisaged as a practical framework for healthcare systems to implement VBHC and has since become an internationally recognised organisation which provides practical pathways for health systems to collect more than just the usual health service process measures.
Over the last decade ICHOM has helped develop 45 comprehensive data sets across a family of domains including cancer, cardiometabolic disease, eye conditions, musculoskeletal disorders, mental health, maternal and child health, infectious diseases, neurology, genitourinary and gastrointestinal conditions, congenital anomalies and generic sets across the life course. Most recently they have published a set in obesity and are establishing ones in trauma and kidney stones. Development of sets includes a wide range of health professionals, consumers and researchers to try to capture both clinical and patient reported outcomes that are key to each condition.
This activity is enhanced by toolkits and an accreditation scheme for health care facilities using these datasets, educational webinars on how to undertake VBHC, and ICHOM’s hugely successful annual conference due to take place this year in Amsterdam on October 21-23 (2024).
The ICHOM research team are establishing Learning Collaboratives, which are aimed to be networks of providers able to compare and improve patient outcomes, and the costs of delivering these. The first one in Breast Cancer includes the Royal Melbourne Hospital, St Luc UCL in Belgium and the Sheba Medical Centre in Belgium. Another activity is mapping the data set terms to allow for digital uploads, which has so far been completed in 12 cardiometabolic and cancer sets.
ICHOM are now keen to develop some new datasets, but also to rationalise many current ones. A Central Expert Panel are helping with harmonisation of outcomes measures, which sets to update, and priorities for new core sets. Importantly, they are advising on strategies for implementation and consumer involvement, asking, for example, how we can reduce burden on patients whilst still making sure we get the relevant and timely information from them to help with management.
Future proposed work is in liver cancer, sickle cell disease, spinal muscular atrophy, a respiratory set (including asthma, obstructive sleep apnoea and COPD), multiple myeloma, migraine, shoulder conditions, endometriosis and peri-menopause and endometrial cancer. ICHOM welcome interest from those who wish to both sponsor and be involved in the development of these.
To read more about ICHOM and the development of outcome sets see:
- ICHOM set resources
- WL Ong, MG Schouwenburg, ACM van Bommel, C Stowell, KH Allison, KE Benn, JP Browne, RD Cooter, GP Delaney, C Saunders, ‘A Standard Set of Value-Based Patient-Centered Outcomes for Breast Cancer: The International Consortium for Health Outcomes Measurement (ICHOM) Initiative’ JAMA Oncol. May 2017 Doi: 10.1001/jamaoncol.2016.4851
