Monday, May 12, 2014

Patient Voice Institute raises patient voices

A special announcement is coming this week at the HXRefactored Conference, the launch of a new non-profit called Patient Voice Institute.  I'm hoping this can be the group that finally gives patient advocates a chance to work together to amplify their voices and influence the healthcare system.

From the website:

The Patient Voice Institute (PVI) is dedicated to the support, advancement and inclusion of the Patient Voice in Health Care. What are “Patient Voices”? Experienced, passionate, informative speakers, presenters, educators and collaborators who provide compelling cases for what patients need from the system, and how to achieve it.

What PVI Does:
  • PVI works with patient organizations and individuals to amplify the patient voice in ways that are comprehensive, consistent and true; developed by, with and for people who are patients, family members and consumers.
  • PVI creates connections across patient groups, patients and families, and health care organizations, associations and others to support all sides in developing true partnerships.
  • PVI provides evidence-based principles that reflect what patients want and need, training and matchmaking for patients and organizations who want to work together, and online promotion programs to encourage patient engagement in the policy direction, operations, and daily interactions of health care.
Led by a terrific team, this could be just what the movement needs.


Pat Mastors said...

Thanks for the post, Paul. Our aim at the Patient Voice Institute is to build a robust community of patient voices where we can harness and share our collective wisdom, passion and insights...where we can learn "best practices" from each other and share them with providers, as well as any organization looking for authentic patient perspective. We're just getting started...but with a great team in place, hope we can make a difference!

beverly said...

I am hopeful along with you, Paul, that this organization can provide the critical mass and unified voice necessary to finally prod reluctant hospital administrators, doctors and others to meaningful national action on patient issues. Something along the lines of what the gay rights community was able to accomplish (which is nothing short of mind-boggling) would be an aspirational goal, I imagine.

Anonymous said...

I hope this organization reaches out to Childbirth Education (CBE) organizations - often, pregnant women are not considered in these patient-driven efforts, yet CBE works to educate and empower women about evidence-based care in childbirth - these voices are too often marginalized (or mocked) in mainstream discourses. Recently a woman filed suit against Staten Island hospital for forced c-section, against her express wishes.