Dr. Lee Lindquist, associate professor of medicine and member of the Institute for Public Health and Medicine at Northwestern, has been awarded a grant from the Patient-Centered Outcomes Research Institute (PCORI). The project, “Leveraging Patient Partner/Stakeholder Engagement to Implement PCOR,” is to help families prepare for the care of the seniors in their family.
When a senior is hospitalized, family must determine where the senior should go for rehabilitation or support them when they return home. If a senior experiences worsening memory loss, loved ones must either find caregivers or become caregivers themselves. Most of these decisions involve reacting to a crisis. The goal of this original PCORI research, Advance Planning for Home Services for Seniors, was to help families be more prepared.
The project team tested the comparative effectiveness of PlanYourLifespan.org (PYL), a tool to help seniors understand their projected health needs and plan ways to remain in their own homes when health crises occur. In the randomized controlled trial (RCT), 385 seniors were randomized to either PYL or a control website. The tool was found to significantly improve patient understanding and planning toward home services. It was also very popular among study participants; although 192 seniors were shown the secure website, PYL experienced over 688 unique users and 3,634 hits before ending the RCT.
Since going live, PYL has been introduced to clients by case managers, in coffee groups between seniors, and among clinicians in supporting their older patients. Although some seniors were wary of online resources, hearing about PYL from a trusted source (e.g., social worker, case manager, senior) helped immensely. This project builds on lessons learned from the team’s patient partners and stakeholders on disseminating PYL.
In Aim 1 of this project, the researchers will develop a PYL TTPS toolkit that will be used to train new partners on disseminating and implementing PYL. The toolkit will be constructed in partnership and through interviews with the project’s original PCORI patient partner/stakeholders. The PYL TTPS training will consist of a face-to-face half-day training session with two follow-up sessions.
In Aim 2, original PCORI award patient partners/stakeholders will train new patient partners/stakeholders who will then train between three and five community leaders on PYL at each new site.
After training, the new trainees will disseminate PYL into their communities for three months. The researchers will then conduct a Usage and Attitudes Trial evaluating PYL usage after three months following training, to determine the effect of the PYL TTPS toolkit and training. The patient partners/stakeholders are fully engaged as coinvestigators committed to helping seniors across the nation age in place and plan for their lifespans.