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More information is available on the Swedish website

This is a simplified version of the Swedish website. For content available only in Swedish, we recommend visiting the Swedish version of the website and using public translation tools like Google Translate or Microsoft Translator. Please note that automatic translations may contain errors, and we cannot take responsibility for any misinterpretations resulting from the use of such tools.

Patient and Family Involvement

Childhood cancer affects every aspect of life – for the child, their family and those around them. That is why it is essential that people with lived experience of childhood cancer have the opportunity to help shape the future of research, healthcare and support services. The experiences of patients and family members are recognised as a unique form of expertise.

Since 1982, people with personal experience of childhood cancer have been an integral part of Barncancerfonden’s work. Over the years, this collaboration has evolved and is now an integral part of how we plan, set priorities and address issues relating to research, healthcare, education and support.

When patients and family members are involved as partners in shaping initiatives, rather than simply as recipients, the work becomes more relevant, compassionate and sustainable. The quality improves as a result. It is not just about being heard – it is about actively contributing to solutions.

Creating the conditions for equal and meaningful involvement

  • Clear roles – everyone has a say and understands their role.
  • Respect – every voice is taken seriously and valued.
  • Safe and inclusive environments – everyone has the opportunity and support they need to participate.

What does it mean to represent your own lived experience?

When people with experience of childhood cancer take part in research, healthcare development or advocacy, it is important to be clear about the role they are being asked to take on: am I speaking from my own experience, or am I representing a wider group?

  • Representing yourself means sharing your personal experience of childhood cancer – as someone who has had cancer, a parent, a sibling or another family member or loved one. This type of involvement is valuable because it provides concrete examples and personal stories that can help shape research priorities, healthcare services and communication.

  • Representing a group means bringing a broader perspective to the table – for example, representing families affected by childhood cancer more generally. This often involves engaging with others in similar situations, reflecting a range of experiences and needs, and recognising that your own experience may not be shared by everyone.

    Both roles are important, but they serve different purposes. That is why researchers, healthcare providers and organisations should be clear about the type of representation they are seeking. The distinction is not always straightforward, but those taking part should receive appropriate guidance and support so they feel confident in their role.

How does Barncancerfonden support patient and family involvement?

As a patient or family member with experience of childhood cancer, you have unique knowledge that can help improve healthcare, research and support. You might, for example, provide feedback on information materials, participate in project groups or contribute your perspective to the development of healthcare and research.

Barncancerfonden helps make your voice heard by sharing information about opportunities offered by different organisations. We connect organisations seeking patient and family representatives with families affected by childhood cancer and their loved ones. We are usually not the organisation commissioning the work ourselves; instead, we act as a link between you and the organisation looking for representatives.

Every opportunity is different. The organisation inviting you to participate is responsible for defining the role, providing any necessary training and determining whether compensation is offered. We encourage everyone interested in taking on a role to complete a free online introductory course for patient and family representatives.

In addition to facilitating these connections, Barncancerfonden also involves patients and family members in our own work. Representatives with relevant expertise can help develop our activities and advance important issues, sometimes in complex national and international contexts.

Current opportunities and training

  • Below are examples of current opportunities from projects seeking to connect with patient and family representatives. If you are interested in taking on such a role, you can find more information about what it involves and contact details for each opportunity here.

    Opportunities are also shared through our newsletter, which is sent to people who have signed up to receive updates about patient and family involvement.

    There are currently no open opportunities.

  • If you are involved in patient and family engagement, training can help you feel confident and prepared for your role. There are several options available, and many people find that training increases both their knowledge and their confidence.

    Here are some examples of general training opportunities that may be relevant to you.

    EUPATI Sweden – Patient Training in Research Involvement

    EUPATI Sweden offers free training for anyone who wants to understand how research works and how they can contribute as a patient representative. You will learn about medicine development, clinical studies, ethics and how to influence research processes. The course is entirely online and is suitable both for beginners and for those who want to deepen their understanding.

    Read more: EUPATI Sweden – Training

    Regional Cancer Centres (RCC) – Online Training for Patient and Family Representatives

    The Swedish Regional Cancer Centres (RCC) offer a free online course introducing the role of a patient or family representative, how cancer care is organised and how you can contribute in different settings. The course is suitable both for beginners and for those who want to deepen their understanding.

    Read more: RCC

    SAMKA – Training and Report on Patient Involvement

    SAMKA (Collaboration for Cancer Research) offers free training and a report on how patient involvement can be strengthened in Swedish cancer research. Based on the report, the training provides practical recommendations for researchers, organisations and decision-makers. It also highlights the importance of training, compensation and long-term support for patient representatives.

    Read more: SAMKA

  • Several international training courses and resources may be relevant to patient and family representatives. The most suitable options will depend on the type of role you take on. Topics may include meaningful involvement, ethics and relevant regulations. Examples include:

    WHO Framework for Meaningful Engagement

    The World Health Organization (WHO) framework for meaningful engagement highlights the importance of involving people with lived experience in the development of health services and policies in a respectful, equitable and influential way. It recognises lived experience as a form of expertise and emphasises that meaningful influence requires clear structures, appropriate support and shared decision-making power.

    Read more: WHO

    EUPATI – European Patients’ Academy on Therapeutic Innovation

    An international training programme providing in-depth knowledge of medicine development, clinical studies and how patients can contribute to the research process. Training is available as both an open online course and a longer certification programme.

    Read more: eupati.eu

Are you looking for patient or family representatives?

Would you like to connect with people who have personal experience of childhood cancer – for example, to establish a patient advisory group or develop a healthcare or support initiative?

Submit a request and Barncancerfonden can help share information about your opportunity through our channels.

Submit a request

Do you have any questions?

Please contact us by email if you have questions about patient and family involvement, current opportunities or how you can contribute your experience.

Email us