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About the Co-created Personalised Healthcare Hub and Toolkit for the Patient Community

The Personalised Healthcare Hub was made with and for the patient community

It is a growing collection of educational materials and awareness campaigns, guidance, and best practice examples. It supports advocates in their work to make personalised health solutions available to everyone. It helps those affected by health conditions to get to know the advantages and benefits that personalised healthcare offers.

There are three key topics that provide structure to the hub’s resources:

PHC Education icon

Literacy building and empowerment

Increasing understanding of what personalised healthcare is and the benefits it offeres for people affected by health conditions. Empowering health advocates to work towards personalised healthcare solutions.

PHC Policy icon
Ecosystem development and policy
 
Embedding views of people affected by health conditions in clinical research, care delivery plans and public health policy frameworks, as well as pricing, reimbursement, and access pathways for personalised healthcare.
PHC Data icon

Data and digitalisation of healthcare

Improving collaborations with health advocates in developing legislation, standards and guidance for health data and digital solutions to personalise health.

How were these topics identified?

Find out more about the core topics of the Personalised Healthcare Hub.

How and why the Hub was developed

It all started with the Roche 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, 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:

Graphic stating: we want to harness the power of new science, data and digital to create truly personal healthcare
Graphic stating: How can we ensure all stakeholders involved are working together and moving in the same direction?
Graphic stating: there's a need to develop tailored tools, guidance and regulations
Together, we worked on the Personalised Healthcare Value Framework, a set of clear, compelling, evidence-based key messages that articulate the advantages and benefits of personalised healthcare for people affected by health conditions. We sourced examples of these benefits in action, and agreed on a way of defining personalised healthcare from the perspective of those affected by health conditions:

“Personalised healthcare involves the tailoring of care to an individual’s unique health needs and preferences”

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.

Personalised Healthcare Hub and Toolkit for the Patient Community

We designed the Personalised Healthcare Hub and Toolkit for the Patient Community logo to represent people while the colours and fluid forms show the personalisation of treatment moving towards improving outcomes for individuals and society.

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.

The Hub is a living collection – with new resources added and updated by our patient partners and you, our community!

Personalised Healthcare Hub

Explore a collection of educational materials and awareness campaigns, guidance, and best practice examples to support advocates in their work to make personalised health solutions available to everyone.

Submit a resource

If you have a resource you would like to include in the Personalised Healthcare Hub, please fill in the contact form below with a link to the resource and any additional details.

Our patient organisation partners

Canadian organization of rare disorders logo
International aliance of patient organisations logo
Lymphoma Coalition logo
European Federation of Neurological Assocations logo
Lungevity logo
Youth Cancer Europe logo
European Patients Forum logo
Retina international logo
The Personalised Healthcare Hub was originally co-created by Roche and its Global Personalised Healthcare Patient Council and the Personalised Healthcare Literacy Squad in June 2021. Please note all materials are the intellectual property of the authors, unless stated to be under Creative Commons license. M-XX-00005824 | Roche Privacy Policy | Roche Legal Statement