Projects

Our first priority is organizing and distilling patient stories, to get the most truthful picture of what patients want and need.

We promise to publish what we find on this website. We promise to advocate on your behalf to make things better.

We also have big ideas about where to go from there:

PVI Training

Your experiences will help form the basis for PVI training for patients seeking greater confidence and impact working with their care teams, and training for physicians, nurses and others who want more successful interactions with patients.

Speakers' Bureau

A bigger and better Speaker’s Bureau, so the patient voice leaders among us can get out there and touch more hearts and minds. Using the arts and media in really cool ways to tell your stories. Outreach to everyone from astronauts to zookeepers, school kids to seniors, so they can be more aware, involved and healthier patients.

Community Q&A Forum

An appealing, easy-to-use forum, where questions, thoughts, answers, and more can be shared with a community of patients, families and even care teams. A voting system will help elevate popular and useful content and make it easier to find for all.

Tools & Resources

We plan to offer free downloadable templates and tools for patient advocates, patients, providers, policy makers and health care organizations. Examples include:

  • A guide on how to overcome common challenges in patient engagement from both a patient and a provider perspective, with simple, effective strategies for what to do or say.
  • A template email to an organization inquiring what patient involvement is included in the planning/speaking/panels in their upcoming event.
  • Free download of the PVI logo, which can be used by any entity embracing the spirit of the initiative.
  • Free resources for patients and providers promoting partnership, such as checklists, a structured form for the patient’s advocate to take critical notes at the bedside, and a template praising or offering constructive feedback to a provider/institution/medical team.