Summing Up: Finding Pathways To Ease PAH Patient’s Access to Care

Dr. Elwing:
Let's sum this up. Let's talk about finding pathways to ease PAH patients access to care. There's been a change in the landscape for our PAH patients. Recent world events with COVID 19 have made it more difficult for our PAH patients to receive the quality of care and disease management they require. The COVID pandemic and economic challenges have added burdens to the PAH patients seeking specialty care. Socioeconomic factors, lack of affordable transportation, prejudices against modern science and medicine, as well as challenges faced by minorities in the healthcare system, all contribute to difficulties of the PAH patient finding and continuing their care. Collaboration between community physicians and PAH specialists can obviate the problem of the undiscovered or underserved PAH patient population but we have to work together to resolve this.

There are solutions, but they take work. A rethinking of the physician's education and to build increased awareness of PAH is important. This is a rare disease, but it can be treated, and followed, and outcomes can be improved. Disease networks can be built for patient education and referrals to make patients easier to access and for patients to find PAH centers. Patients and physician education around PAH can help pave the way for more patients to obtain specialty diagnosis and disease management. The COVID 19 pandemic inspired a rise in telemedicine and remote patient monitoring, we just need to take it to the next level. Cooperative arrangements between community physicians and PAH specialists can improve this access to our PAH diagnosis and treatment if we open lines of communication, we improve communication in terms of education and patient follow up and working together to care for patients.

So, I'd like to end with some final thoughts. While patients generally hold favorable views of telemedicine, there are numerous areas which require development or refinement, and they include minimizing technological burdens for patients and secondarily for the healthcare providers. We've made great successes and great improvements here but we have more to come. Continued development of peer-reviewed and accredited tools for remote PAH patient risk assessment like a validated six-minute walk distance is needed and we are working on this. Validation of modernized risk assessment protocols for the telemedicine-based patient environment is important. An improvement of physician skills in using telemedicine to effectively and efficiently perform remote PAH risk assessment is key and we need to continue to advance this. Creating better educational interfaces for patients and healthcare providers to understand the appropriate identification and treatment of PAH is important and we need to continue our efforts on this area. So, with this, I'd like to say thank you so much for joining me, and I hope you enjoyed this presentation.