How and why the Hub was developed

It all started when Roche formed the Global Personalised Healthcare Patient Council, a group of advocacy organisation leaders who are interested in and leading the way for involving people with health conditions in personalised healthcare solutions. In August 2019, Roche and the Council met and agreed that increasing personalised healthcare literacy among those affected by health conditions, carers and the health advocate community should be a priority. We agreed on key elements delivering value for people affected by health conditions:

This definition covers a wide range of healthcare approaches and personalised solutions, such as person-centred care, individualised care, value-based care and the growing fields of genomic testing, biomarkers, health data and digital health.

Next, the council suggested that we develop a toolkit to help bring these messages to the broader community in a practical, useful way. We formed a working group of patient organisation leaders, and in July 2020 we started to develop a collection of educational materials for people affected by health conditions, the wider community and the health advocates that support them. These materials make up the Personalised Healthcare Toolkit for the Patient Community, and include a core slide presentation, an infographic, a factsheet, frequently asked questions and a glossary.

Knowing that there are also so many excellent resources created by patient and health organisations available online, we started collecting existing materials, guidance and best practice examples.

Our key topics provided the framework for an interactive Personalised Healthcare Playbook for Health Advocates with clear ideas and support for taking action to make personalised solutions available to everyone. It includes resources covering key topics such as genomic testing, biomarkers, health data, digital health, person-centred and value-based care. The Playbook forms the final part of the Toolkit.

In May 2021, we decided to bring the Toolkit online, building the Personalised Healthcare Community Hub within the website for the International Experience Exchange with Patient Organisations (IEEPO). Now a truly community-led initiative, IEEPO.com is the perfect host, and our resources complement the IEEPO Learn module, which you can read more about here.