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Patient Engagement & Why It Matters

This is the first in a series of blogposts on Patient Engagement in Research.

What is Patient Engagement?

“Patient engagement” is a phrase you may hear a lot. Everyone seems to talk about this, from providers to advocacy groups. But what exactly is patient engagement? Why is it such a hot topic?

As one healthcare blog puts it, “patient engagement in healthcare is defined as patients actively engaged in gathering information and making decisions about their symptoms, illnesses, and treatment options.” This includes research, advocacy, and policy making. Patient engagement can refer to one, some, or all of these activities. But the root of it is meaningful collaboration.

Why is Patient Engagement Important in Vascular Health?

Aren’t doctors and nurses there to provide patients with care in the first place? Why do we also need to be educated on our disease? Why get involved in research? These are valid questions!

The benefit of engagement is that it allows patients to become key decision-makers in their healthcare. Shared decision-making is important because patients become more informed about health care and treatments. When a doctor tells you to walk for 30 minutes a day or avoid certain foods, you may wonder, where does that advice comes from? Does this advice consider the reality of living with vascular disease? More importantly, does it make sense with my personal experience?

Life can become more stressful after a diagnosis. No one knows that better than patients. So it’s important to have patients involved in the research that leads to this advice. Scientists, researchers, and health providers have realized how critical it is to include the patient perspective in the vascular disease realm. Future blog posts will dive more into this specific issue.

For now, let’s bring it back to you. As it turns out, patient engagement is also a way to take more control of your health. Studies show that when patients are engaged in their diagnosis and treatment, they are more likely to improve their health and quality of life. Additionally, engaged patients report feeling more empowered and independent. Mindset and mood matter greatly in managing your vascular health.

How does Patient Engagement Happen?

Patients and providers agree: technology is beneficial for engagement. Many clinics and healthcare providers have online portals for patients. On those platforms you can access information and provide updates. Educational resources about vascular disease and how to take control of your medical journey can be found online. You can even find resources on the Vascular Cures website!

Many people don’t realize that they are increasing their patient engagement when they ask questions, do research, and tell their stories. Let’s look at a few examples of how you can engage. 
 

  1. Do some research online about your vascular disease. Be sure to use accurate, evidence-based sources, such as Johns Hopkins Medicine. You can typically find quality information from universities, or medical associations such as the American Heart Association. Share interesting articles or blogs with friends and family members. The more you advocate for your experiences, the more your loved ones will understand your journey. 
  2. Talk to your care team about ways you would like to get more involved in your health care. It’s helpful to come prepared to your doctor’s visits, especially if you’ve been doing some research. It is your right to ask for more details about your symptoms. We encourage you to speak up or ask your provider for more resources if you have questions about a diagnosis or treatment.
  3. Find and join groups on Facebook that promote patient engagement through storytelling and resource-sharing. You might even consider joining Vascular Cures’ Patients as Partners program! Collaborating with other patients can empower and motivate you as you seek to become more engaged. When using forums such as support groups, be aware of potential medical misinformation and make sure to always check with your provider before making care-related decisions.  

For more information on the benefits of patient engagement, and on how to be a more engaged patient, please visit the following resources:

https://cihr-irsc.gc.ca/e/51916.html

https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-019-0165-z

https://pubmed.ncbi.nlm.nih.gov/26950206/

https://bmjopen.bmj.com/content/10/2/e031187

https://www.pcori.org/research-results/2015/connecting-patients-and-researchers-engage-patient-centered-vascular-disease

http://sites.dartmouth.edu/patientadvisors/

https://www.pcori.org/engagement/engagement-resources/Engagement-Tool-Resource-Repository/patient-advisors-course-vascular

https://www.pcori.org/engagement/engagement-literature

https://prezi.com/view/2t1Go1QrcMvaPeovQefA/

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