The importance of shared decision making is well documented – but how do we ensure people have the information they need to take part in their own healthcare and follow the path to empowerment?
The Patient Empowerment Network (PEN) believes the answer lies in providing the appropriate information and signposting at each point of the patient journey.
“Our mission is to fortify cancer patients and care partners with the knowledge and tools they need to boost their confidence, put them in control of their healthcare journey and assist them in receiving the best, most personalized care available,” says Kara Rayburn, PEN’s Director of Digital Communications and Engagement.
“Our goals are to enhance health literacy and enable shared decision-making so patients can ask the right questions at the right time.”
To achieve this, the group has launched a new website, the framework of which is based on the National Cancer Institute’s cancer experience map. The team have called this approach the “path to empowerment”.
Six crucial points
“The framework we follow is based on six crucial points along the healthcare journey,” adds Kara, who explains people need different patient information and support resources at different times.
The pathway works by breaking down the journey into milestones including newly diagnosed, testing, treatment and clinical trials access, affordability, and whole-patient support. It means that patients can go onto the website at any point and access easy-to-digest information that applies to their personal circumstances.
Andrea Conners, Executive Director at PEN, adds: “The key is enabling people to ask the right questions at the right time. The path to empowerment means they can dip in and out and get that specialized information when they need it most.
“We want to help people to say, ‘Okay, here’s where I am in my journey, here’s what I need to be thinking about, here’s what I need to be asking about, here’s what I need to be advocating for’.”
While no two patient journeys are the same, she adds, the framework offers a structure for people to work with.
“Even though it’s called a ‘path to empowerment’, you don’t have to follow that path step-by-step to become an empowered patient.
“This is about those commonalities of experience that people share along their journey, even if it’s not necessarily a linear route,” she finishes.