At Social Health Network, our job is to help you go from being a patient or caregiver to a powerhouse in the community.
We want to give you the tools to:
- Use your voice to make the needs of your community known
- Support or oppose legislation that empowers or endangers patients
- Organize and use the voices of other suffering people to make your needs known to industry leaders.
- Giving you a seat at the table when it comes to how the world views, finances, and prioritizes your life.
By giving you the training you need to become a patient leader, we help you move through the advocacy cycle. This causes the kind of change we know is possible when voices like yours are heard!
In the world of law, we all play a role. Patients and the pharmaceutical industry are heavily dependent on each other to create new treatments and cures. It is important that when you become a health leader you understand how the flow of funds works to get us there. Take a look at the chart below and let’s follow the cycle of the promotion.
Diagnosis and self defense
We start with patients receiving a diagnosis and learning to advocate for themselves. The defense could be working to get the treatment you need or learning to manage your illness. For some, this path is easy because the resources already exist. For others (such as those with rare diseases recently discovered through whole genome sequencing), the road can be much lonelier. But when we advocate for ourselves in the exam room, we find that we can use the same tools to advocate for the entire community and cause.
The step of patient collaboration is essential to lead us to drug development. This can also lead to ongoing funding for non-profit organizations, patient resources, and even sites like ours that offer community centers. In numbers, we are stronger. That’s one of the reasons we’ve always worked to create spaces for patients to connect and strategize on how they can help their communities together.
But what does this mean? We’re not talking about just handing out flyers and organizing support groups. We’re talking about creating real, meaningful data sets that can lead to treatments and cures. Patient registries, for example, can alert the entire community to potential clinical trials and studies in which they can enroll to participate. They can come together and show gaps in care or treatment. This can be suggested to the industry and let them know where help is most urgently needed.
Which brings us to the next phase, the collaboration between the patient and the industry. The truth, and it may be hard for some of us to swallow, is that patient-industry collaboration is crucial to funding. each awareness effort in each community. Drugs are not developed out of nowhere, they are investigated and appear according to the needs of the community that requests them. That’s you. That’s us. Working with the pharmaceutical industry means we can move to the next step, which is…
Drug discovery and commercialization
Pharma will rely on the patient community to:
- Create clinical trials
- Show 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 can funnel that money toward support groups and nonprofit organizations. This helps raise more awareness about the disease and continue to find patients who need the drug.
Through all of this collaboration, patients are heard, diagnosed, treated and connected to create better overall outcomes for their communities.
If you’re new to defense and wondering how best to find yourself in the defense cycle, know that you embody these three elements that keep the defense cycle moving. As a healthcare leader, your responsibilities include:
- Express the need for better diagnosis, treatment, social acceptance, and social and financial support: Your thoughts, ideas, feelings, and difficulties should be shared, whether in blog posts, on social media, through newsgroups, or other opportunities to talk.
- Being the public face of your condition and embodying the human element of what it means to be a patient with this disease. This helps reduce stigma and unite compassion between those 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’re not just a patient, you’re a person with a life worth caring for.
- And lastly, your ultimate responsibility is to hold healthcare accountable for its work by providing feedback and guidance on its work to ensure patients are always put first.
As a Health Leader, you are at the center of the advocacy cycle and without your work, nothing can be improved in health care.
If you haven’t done so yet, sign up to be part of the Social Health Network.