At Health social networkour job is to help you move from patient or caregiver to community leader.
We want to give you the tools to:
- Use your voice to raise awareness of your community’s needs
- Support or oppose legislation that empowers or endangers patients
- Organize and use the voices of others who are hurting to make your needs known to industry leaders
- Give yourself a seat at the table when it comes to how the world views, funds and prioritizes your life.
By giving you the training you need to become a patient leader, we help you move forward in the advocacy cycle. This results in the kind of change we know is possible when voices like yours are heard!
In the world of advocacy, we all play a part. Patients and the pharmaceutical industry rely heavily on each other to create new treatments and cures. When you become a health leader, it’s important that you understand how the flow of funding works to get us to the finish line. Take a look at the chart below and let’s trace the advocacy cycle.
Diagnosis and self-representation
We start with patients who receive a diagnosis and learn to advocate for themselves. Advocacy can be about getting the treatment you need or learning how to manage your illness. For some, this path is easy because the resources already exist. For others (like those with rare diseases recently discovered through whole genome sequencing), the road can be much lonelier. But when we stand up for ourselves in the exam hall, we discover that we can use the same tools to stand up for the whole community and the cause.
The patient engagement stage is key to getting us to drug development. It can also lead to continued funding for nonprofits, patient resources, and even sites like ours that offer community hubs. In numbers, we are stronger. It’s one of the reasons we’ve always worked to create spaces for patients to connect and strategize about how they can help their communities together.
but what does that mean? It’s not just about handing out flyers and organizing support groups. We’re talking about creating real, meaningful datasets that can lead to treatments and cures. Patient registries, for example, can alert the wider community to potential clinical trials and studies they can register to participate in. They may cluster and show gaps in care or treatment. This can then be suggested to the industry and let them know where the most urgent help is needed.
Patient and industry collaboration
Which brings us to the next phase, collaboration between patients and industry. The truth – and some of us may find it hard to swallow – is that collaboration between patients and industry is key to funding each awareness-raising effort in each community. Medicines are not developed from scratch, they are researched and created by the needs of the community that demands them. It’s you. It’s us. Working with the pharmaceutical industry means we can take the next step which is…
Drug discovery and commercialization
Pharma will rely on the patient community to:
- Create clinical trials
- Present the need and support for drug approval
- Work with other patients to market the drug, so newly diagnosed patients can learn about their treatment options.
Pharma then profits from the drug and is able to funnel that money back into support groups and non-profit organizations. This helps to raise awareness of the disease and continue to find patients in need of the drug.
Through all of this collaboration, patients are heard, diagnosed, treated and connected to create better overall outcomes for their communities.
If you are new to advocacy and wondering how to navigate the advocacy cycle, know that you embody these three elements that move the advocacy cycle forward. As a healthcare leader, your responsibilities include:
- Expressing the need for better diagnosis, treatment, social acceptance, and social and financial support – Your thoughts, ideas, feelings, and struggles should be shared, whether in blog posts, on social media, through groups reflection or other speaking opportunities.
- To be the public face of your condition and to embody the human element of what it means to be a patient with this disease. This helps reduce stigma and build a compassionate connection between people with the disease and those without. This doesn’t always mean literally sharing photos, but rather being vulnerable and open about your experiences and helping others understand that you are not just a patient, you are someone whose life is worth taking care of.
- And finally, your final responsibility is to hold healthcare accountable for its work by providing feedback and guidance on its work to ensure that patients are always front and center.
As a health leader, you are at the center of the advocacy cycle and without your work, nothing in health care can be improved.
If you haven’t already, sign up to be part of the Social Health Network.