Conditions for successful advocacy

In the earlier steps, we have shared how you can advocate for your disease/condition by being involved in shaping the delivery of healthcare, research and policy-making.

To help you to be an effective advocate, we have identified these conditions for successful advocacy which would help you to achieve your goals.

Know who and what you are advocating for

Having a clear mission that articulates the purpose behind your advocacy is essential as it provides the foundation of your advocacy. That means knowing clearly what the purpose of your advocacy is, and the impact you hope to make. This will act as a guiding star, ensuring what you do is aligned with your core goals.

This also means having a thorough understanding and knowledge about genomics and the disease/condition you are advocating for, so that you can communicate complex information in an accessible way to your stakeholders – which could be the patient community that you work with, clinicians, researchers, policymakers and members of the public.

Advocating for your patient community also means understanding what matters to your patient community, even if this sometimes differs from your own personal perspective. This will ensure that the needs, experiences and voices of your patient community remain at the core, while championing inclusion to recognise the rich diversity (e.g., differences in socioeconomic backgrounds, cultural perspectives and educational experiences) in your community. This will also help you to avoid scenarios where you are expected to provide, or claim to be, ‘the’ patient voice in a discussion; your advocacy work should reflect and recognise the diversity of views among your patient community.

Build Relationships

Building relationships and trust will help to advance your advocacy. When there is trust, everyone is more likely to collaborate, which will open up partnership opportunities and provide access to resources, such as potential funding sources. It will also strengthen your ability to influence decision-making and change.

Working with a team of like-minded advocates can energise and support your work. This can be patient partners within your patient organisation or anyone, including patient advocates of other conditions/diseases, healthcare professionals or researchers who share the same passion for change.

Equally important is building relationships with organisations and decision makers/leaders who are keen to partner and collaborate with you. This means understanding their needs and perspectives (and how these may differ from your own), building trust and credibility with each other and having regular channels of engagement. You will learn more on how to balance your advocacy with organisational needs in a later step of this course.

Have sustainable systems

Sustainable advocacy depends on having systems that not only address immediate needs but also create a foundation for long-term impact.

Here are several sustainable systems that you would want to consider:

a) Funding and resource allocation

For yourself

You will need to reflect on what you need to sustain this work in the long term for yourself. If you are working with organisations as a patient partner in their project and committees, do have a discussion with them on compensation/reimbursement for your time. However, it can be a sensitive topic if the organisation does not have a patient partner compensation system, which might be the case in certain communities and countries where patient partnership in projects is new.

For your patient group

Reliable funding is very important to sustain advocacy operations in patient groups, such as paying staff and supporting ongoing projects. To ensure financial stability, you can look at developing diversified funding streams – such as grants, donations, corporate partnerships and government support. Going hand in hand is having sound financial management practices that would translate to financial sustainability and support long term projects and capacity building.

Equally important is to advocate for and ensure that patient partners who are involved in projects, research and policy-making consultations are compensated for their involvement. There is various international and country-specific guidance in place to support patient partner compensation that you can refer to. See 4.14 for practical guidance on patient partner payment.

b) Systems for evidence-based advocacy

Evidence-based advocacy grounds your efforts in reliable data and research, making your initiatives more persuasive and impactful to your stakeholders.

Evidence can come in many forms and there are strategies and approaches to gather and use evidence for advocacy purposes. For example, this practical guide by Health Research Charities Ireland (HRCI) was co-developed with patient-focused organisations, on the gathering and generation of evidence, the use of evidence to influence policy and the role of the media in evidence-based campaigns: Evidence for Advocacy: A Practical Guide by Health Research Charities Ireland (HRCI)

This would entail investing in systems for gathering and analysing data and leveraging digital tools and platforms for research, communications and tracking outcomes. Patient advocacy groups may find they need a technical partner organisation to achieve this.

If you are hoping to use evidence you gather as the foundation for a clinical trial, it’s also important to understand what level of detail and research governance is required, before you begin collecting the data. Learning about the basic clinical trial methodologies, and partnering with a clinical trial company if possible, will help to ensure you get this right.

c) Capability and capacity building

Advocacy is meaningful and exciting work. But to do this work really well, spending time to develop the skills and knowledge in patient advocacy will help each of us build our confidence and enhance our impact over time. This means having a learning plan for yourself and establishing mentorship and professional development programmes.

Attending training workshops, conferences and online courses on up-to-date knowledge in areas like genomics, healthcare trends and advocacy would help to build you and your team to advocate with confidence and precision.

This also applies if you are part of a patient group. Empowering your staff and volunteers through building their capability and capacity can help to sustain, scale and achieve your organisation’s goals.

This step has made a series of recommendations for successful advocacy by individuals and community organisations. See how many of these are also reflected in the next step, a case study from a group of research participant representatives working with a very large organisation, Genomics England.

Before you proceed, do take part in the discussion below.

Discussion

How can you apply these conditions for successful advocacy in your context? What will you do to effectively communicate diverse perspectives, build relationships for long-term impact and ensure the sustainability of your advocacy efforts? Share your thoughts in the comments box.