THE BLOG
01/19/2017 03:38 pm ET Updated Jan 20, 2018

Patient Voices, Patient Value: Stepping Out of the Ivory Towers and into the Real World

Going into a new Congress and a new administration always holds some level of uncertainty for all stakeholders, but this transition is particularly stressful for patients faced with more uncertainty than usual about what their health care options will be in the future. Having epilepsy myself, and having pushed for the Americans with Disabilities Act as a Congressman, I remain committed to patients and people with disabilities, and making sure their voices are heard in Washington. I intend to carry this same commitment into our work with the new administration and Congress, and I hope others do as well. We must make sure the voices of patients, caregivers and people with disabilities are respected in this next chapter of the health care reform debate.

Although the outcome of this election was unexpected to some of us, the anti-establishment sentiment that propelled this result is analogous to the sentiments that drove the creation of the Partnership to Improve Patient Care (PIPC) and propelled me to get involved. Patients wanted a voice in research and in health care policymaking, because, too often, traditional research is irrelevant to the goals we have for our health and our lives. New payment models are too often developed and deployed without patients at the table.

While I may not concur with everything coming out of the new administration on health care, I agree broadly with the need for policymakers to get out of the ivory towers. Policymakers need to listen to real patients and embrace health care solutions that matter to patients, caregivers and people with disabilities. And frankly, in this drive to value-based health care, it hasn't always been about us. It's often about what is most cost effective for the "average patient" and what is most cost effective for the payer.

But I am not average. You are not average. We are the reason a health care system exists - our health and well-being, our treatment, our recovery. That is why engagement of patients and people with disabilities is my ministry.

Last year, PIPC collaborated with patient groups to make it our number one priority to push for patient engagement in the development of alternative payment models. While we've seen a transformation around patient engagement in research and with Patient-Focused Drug Development, we still have our work cut out for us in the payment and delivery of health care. We intend to keep pushing for things like a patient advisory panel within the CMS Innovations Office so that they develop models of care that patients can support. And we will keep speaking out against any overreach by CMS to develop new payment and access models at the Innovation Center that do not involve patients in the design. If policymakers want patients at their side driving value-based health care, then they have to build the infrastructure for patient engagement and avoid paternalism.

This administration can build bridges to the community of patients and people with disabilities by demonstrating they do not want a one-size-fits-all system of health care defined by people in lab coats. If this administration truly wants to get input from outside the establishment, then they should be looking to patients for insight as to how to improve the health care system.

Keep in mind that Congress will continue to focus on the issue of "value" in health care, and it will be up to us to explain how patients define value. Similarly, the onus is on us to explain why it is more efficient and effective to have a health system that doesn't force patients into treatments that will fail them ... before they can get to the treatment that will work for them.

Additionally, the shift to value-based models in Medicare and Medicaid must be aligned with personalized medicine and the Precision Medicine Initiative (PMI), which rarely got mentioned in the campaign and I suspect the new administration will support. The goal of the PMI is to develop targeted therapies for patients. To quote my friend Joe Biden, we should also be paying for care that patients value. That means we have to know what patients value, and we have to be able to measure whether we are achieving it.

We are at a crossroads in health care. We may differ on some details, but we must be united in upholding the patient as the alpha and omega of healthcare. The health of our citizenry and the ability to balance efficiency and innovation in the scientific sector hinges on our ability to maintain transparent and inclusive processes from discovery to delivery. If we hope to align our health system with our considerable investment in personalized and precision medicine, patients must be at the table.