St Jude Children's Research Hospital PFAC

Many organizations have found synergy exists between their Patient and Family Advisory Council (PFAC) and volunteer services. A PFAC is an organization of current and former patients, family members, and caregivers that works together to advance best practices at a hospital or healthcare organization Johns Hopkins Medicine, 2024. PFAC members may be used to advise in policy making and program development initiatives for an organization New York Presbyterian, 2024. A Beryl Institute study in 2021 found that only 51% of the nations hospitals have implemented and operationalized PFACs Ventz-Migneco, 2024. but suggested that more organizations would benefit by creating a PFAC.

St. Jude began a PFAC in 2008. After adding VSys One in 2021, they reorganized their PFAC organizational structure to consist of an overarching board of advisers with multiple steering committees reporting up to the board. The board is made up of both staff and caregivers whose task is to lead a steering council that ensures a connection between the council and the PFAC. Currently eleven steering councils make up the board of advisers with the flexibility to add more based on the needs of the institution: Affiliates, Caregiver Support, Comprehensive Cancer Center, Hematology Clinic, Housing and Patient Services, Nursing, Patient Education, Patient Experience, Quality & Patient Safety, Quality of Life and Teens and Emerging Adults/ Past Patients. The reorganization was designed to strengthen the PFCC program by fostering a more unified approach, enhancing the inclusion of patient and caregiver perspectives, promoting interdisciplinary collaboration, enabling more effective co-design processes, and increasing adviser engagement throughout the institution.

Approximately 150 advisers serve in a variety of ways, and many serve on the steering councils. All the advisers are volunteers (see Figure 1 for a full list). Note that many organizations consider these steering councils as individual PFACs or service line councils. For example Children's Mercy in Kansas City, MO, began with a Teen Advisory Board (TAB) in 1999 and in 2023 had 18 PFACs, with 203 patient and family advisers (PFAs) serving on them IPFCC.org, n.d.. For a case study on Children's Mercy PFAC journey visit: www.ipfcc.org/profiles/childrens-mercy.html Patient Family Advisory Council chart

St. Jude adopted VSys One to manage not just volunteer services but also to help manage their PFACs and other volunteer programs. Using VSys One to automate tasks freed up staff from manual tasks like data entry and helped St. Jude handle the workload with limited staff resources. It allowed staff to focus more on project management where they can really have an impact.

One of the biggest challenges with managing advisers is communication. VSys assists with addressing this challenge by listing each Steering Council as a Job Association. Now specific communications and notifications can be sent to each steering council as needed.

Previously, each group of advisers were given training by the Patient Family-Centered Care (PFCC) staff or other staff members throughout the institution in different ways. It wasn't possible to determine if the necessary information had been conveyed. Now, using VSys, the onboarding and training processes have been streamlined and are done systematically. Everyone gets the same information, the same training, the same notifications. Within the current process, advisers are onboarded and trained in the same way, regardless of their placement. Once a placement is determined, the adviser is sent a notification to sign up for a specific training with their staff supervisor who is the content expert in their area. These notifications can be sent via text or email and are easily identified within VSys.

Prior to adopting VSys, another volunteer management software was used along with Excel. These products did not provide an "all in one solution" and a lot of time was spent typing information into Excel. While St. Jude still uses Excel for visual graphs and big picture data, it is much easier to report on data now - and the data is easily exported out of VSys.

VSys One has been configured to track PFAC engagement and contributions. Each adviser gets a notification that lists their job associations and hours recorded. This lets advisers check that the hours entered are correct. If they see an error or are missing data, they can fix it in real time. As a result, data integrity has improved as errors are caught earlier. This also resolved a problem that had existed in the past as PFAC staff were often not notified when committees were disbanded or ended after completion.

Some hospitals view PFACs as parallel to their volunteer program while others see them as completely separate entities. St. Jude made the decision to consider them parallel as this allowed them to gain efficiencies in economies of scale. By making the onboarding process consistent for both volunteers and PFAC members, St. Jude avoided duplicating efforts. They found that while there are some variations, in general, the onboarding process was similar. Having a single VSys One database made collaboration even easier and reduced the workload required to establish eligibility (onboarding) checklists, track certifications, and create/manage automated communications. A lot of synergy was found in how both PFAC and Volunteers track hours, job associations etc.

One challenge that emerged is the number of steps involved in onboarding as this can be very confusing to new applicants. St. Jude found that increasing communication about compliance helped people understand why the process was so extensive. They also evaluated the process to see if it was possible to make it simpler. VSys's eligibility checklists were configured to allow PFAC members to bypass certain onboarding steps that were only applicable to volunteers.

St. Jude uses VSys to track the experience of their advisers as well as their demographic information and what they represent in terms of experience and diversity. The St. Jude team is still learning the best ways to manipulate this data. Often it is a matter of finding an appropriate fit for a need. For example, there may be a need for someone with a specific clinical experience. This can be done in a number of ways in VSys and they are still learning the easiest ways to quickly search on specific criteria.

St. Jude experienced some challenges when adopting VSys for their PFAC programming. Because there are so many options in VSys, there is a large initial learning curve and an ongoing need for staff time to manage the software. St. Jude underestimated the staff time and energy this required. St. Jude recommends that new adoptees be prepared with staff capacity to dedicate at least two hours a week to software management.

They also learned that they needed to consider the impact of changes made in the system. Their previous software had been a one dimensional tool that didn't allow them to make structural changes. They quickly learned that almost everything in VSys can be customized. However, when you make a change in VSys it can have an impact on the process down the line.

Implementation was difficult as St. Jude didn't comprehend the full potential of VSys. While VSys had a very structured implementation process, it wasn't until after the system was implemented that St. Jude began to see how everything fit together. Implementation is done in phases which was recognized by both VSys and St. Jude as a Catch-22. Pre-work had to be completed prior to setup but this didn't provide St. Jude staff with the context they needed to see the big picture. Brittany Barnett, one of the St. Jude superusers stated, "Data and structure needs to be in place so you can go in and execute the tasks to get the database working, but until you actually see it, you don't necessarily understand the 'why' which can make the pre-work difficult". It did help that training was done with actual St. Jude data, but it is still hard to visualize the system as a whole until a couple months after implementation is complete. This meant that St. Jude couldn't revise their processes to take full advantage of the software's automation and capabilities until after the initial implementation was complete. St. Jude notes that they are still learning all that VSys can do!

In conclusion, St. Jude is finding that VSys provides a solid tool for managing their PFAC programing. Having consistent processes for onboarding and communication greatly reduced their workload. St. Jude recommends that PFAC staff should reach out to volunteer programs to discuss collaboration and how to avoid building redundant systems or processes. For example, a majority of onboarding can be done in conjunction between the two teams.

American Hospital Association (2022, January). Patient and Family Advisory Councils Blueprint: A Start-up Map and Strategy Guide. Retrieved from: www.aha.org

Agency for Healthcare Research & Quality (n.d.). Working With Patient and Families as Advisors Implementation Handbook. Retrieved from: www.ahrq.gov

Institute for Patient- and Family- Centered Care (n.d.). What is patient- and family-centered care? Retrieved from: www.ipfcc.org/about/pfcc.html and www.ipfcc.org/

Johns Hopkins Medicine. (2024). Patient and Family Advisory Councils. Retrieved from: www.hopkinsmedicine.org

Lewis B. (2023) Success of Patient and Family Advisory Councils: The Importance of Metrics. Journal of Patient Experience. 2023;10. doi:10.1177/23743735231167972

New York Presbyterian. 2024. Patient & Family Advisory Council. Retrieved from: www.nyp.org

The Beryl Institute. (April 19, 2024). PX Chat on PFA/PFACS: New/Getting Started. Retrieved from: theberylinstitute.org

Ventz-Migneco, Deborah (April 19, 2024). PFACs in 2024: Renew, Restore, and Revitalize for a Patient-Centric Future. The Beryl Institute. Retrieved from: theberylinstitute.org