It's Time to Redefine PFAC

How does “Pretty Friggin’ Awesome Community” grab you?

Photo by  Chirag Saini  on  Unsplash

The Patient Family Advisory Committee is, by now, a fixture in most healthcare settings. But in conversation after conversation with healthcare leaders, we know that PFACs tend to languish: lacking in administrative support, unclear as to expectations or the impact their group might have, full of willing volunteers who bring skill sets and life experiences that are too often underutilized.

Add to that the fact that many meet monthly or quarterly in one place, for a set amount of time which effectively eliminates the odds that a PFAC will truly represent a diverse cross-section of a health system’s demographic.

We’re proposing another idea, and we’re giving it to you today. Why? Because we believe that connections fuel experiences and we’re dedicated to increasing the connections that foster meaningful, relevant, patient-centered changes in healthcare. Our own personal experiences in serving on local PFACs have led to this concept, which we’ve initially coined “PFAConnect.”

First, try these new definitions on for size:

  • PFAC: Patients, Families, Advocates, Changemakers;

  • PFAC: Providers Foster Amazing Connections;

  • PFAC: Participation From All Corners; and

  • Our fave, mentioned above.

To set it up, here’s the elevator speech:

For grateful patients who want to give back to their healthcare system, PFAConnect is a digital neighborhood that connects diverse PFAC advisors to healthcare organizations in relevant, meaningful ways. Unlike the currently underutilized place-based system for PFAC management, PFAConnect is different because it enables connections across time, geography, capability and condition.

This digital neighborhood will enable health systems to broaden their aperture with respect to participatory interactions with patients and families. Using existing Web-based technologies that focus on community building, PFAConnect is a human-centered approach that respects limited bandwidth, budgets, time and levels of interest for every human being in the system.

The concept: a healthcare organization uses a web-based tool to solicit information from internal departments, such as surveys/polls for condition-specific patients, opportunities to participate in on-site meetings (policy, design reviews), reviews of proposed content (e.g. billing language on Web), etc. These are posted as individual, curated projects in an online environment where people from across an organization’s demographic can participate in ways that respect their time and honor their expertise.

The process: Staff are encouraged/incentivized to recruit community members who are particularly active advocates, or who demonstrate specific skill sets. These individuals can be solicited (via a printed card or email invitation) to go to the site and take a short online survey in order to qualify for membership. Once complete, they receive regular emails detailing opportunities to intersect with the health system in the ways in which they’ve opted to participate. For instance, a dialysis patient could sign up for a series of online surveys, choosing to respond as interest/incentive and convenience dictate.

The incentive: In return for their participation, advisors may be offered incentives to choose and earn small rewards, such as a $20 gas card for a completed survey, to larger incentives such as a $150 stipend to participate in a series of on-site meetings over the course of a departmental redesign process. Each opportunity has a start and end date and a primary contact on the provider side for direct interactions, as required by the nature of the assignment.

The shift: This circumvents the imperative that PFACs meet once monthly - in one location - for a certain prescribed amount of time - all of which limit potential participants and create a small keyhole through which interactions occur between the community and the institution. By building an online community, entire health systems can demonstrate to their constituents that they are actively seeking feedback in order to improve experiences.

And just like that, you’ve created the beginnings of a patient-centered culture where true alchemy can take place. Who knows what might result?

Online communities foster connections

We’ve looked extensively into a software subscription called “Bang The Table” which is doing amazing things in the online community building space for cities, governmental entities, healthcare institutions around the world. According to representatives from the company, for less than $20K per year (depending on the scale of the effort) you can have access to the full functionality of the platform, 24/7 moderation, 24/5 live chat support, and strategic support from online and in-person human beings that can help you make this vision reality.

Rather than describe this here, take a peek at some of the work that they’re already doing:

Engage: Primary Health Tasmania

Let’s Talk Health: Palliative Care

Be Heard Boulder

This software works much like Squarespace, the Website building platform where you build a branded site that is fully functional across devices and can be easily edited/updated and moderated. You hold all of the data and control the extent to which the information is publicly available or not.

All of the potential options that an online community building software can provide.  Source: bangthetable.com

All of the potential options that an online community building software can provide. Source: bangthetable.com

Full disclosure: we have no current relationship with Bang The Table other than friendly conversations that have clarified functionality and cemented our belief that PFAConnect is a valid concept being effectively employed in healthcare settings. We would encourage anyone to research other types of community building software packages that may fill this need.

The simple fact is that these online communities can be built in very little time, using relatively small budgets to foster transformational impacts. The potential ROI is, in our opinion, eminently clear.

To help you build your case internally, we’ve already thought through this a bit:

Pros:

Provider

  • Ready resource for any type of input: survey, on-site, review of policy, etc.

  • Curated pool for receiving input: not necessarily soliciting the general public

  • Avenues for outside expertise that had previously been unavailable

  • Small budget for incentives can bring transformational rewards

  • Foster a culture of deep patient engagement, and a resource to make it work sustainably

  • New avenues for quantitative and qualitative data which help direct decision making

  • Subscription-based service, relatively low cost of entry

Patient/Family:

  • Respectful of time constraints, level of interest, geography, condition, socio-economic status

  • Bring skill sets, life experiences to bear on real-life issues that can have long-lasting impacts on other patients’ experiences

  • Opportunity to earn rewards by participating in ways that they themselves dictate

  • May be flattered to be asked to participate, foster long-term involvement in building a care system for their communities

  • Ability for grateful patients to tell stories, share opinions, be heard and seen, give back.

  • Secure Web browser-based, password access.

  • Organic community building once “tipping point” of participation is reached

Cons:

Provider

  • Online environments must be curated/managed by person/dept.

  • Lack of internal buy-in, connectivity leads to few opportunities

  • Trust that the information is usable, without agendas

  • Using data to influence change, rather than simply checking the PFAC box

  • How to integrate with existing IT sources

  • “Creating the pitch” to administrators and patients/families

  • HIPAA restrictions, others?

Patient/Family

  • Potential to be seen as relatively impersonal interface with health system

  • Lack of robust opportunities for connection/input due to lack of vision by health system leadership

  • Impression of token rewards for providing valuable information

  • Trust that the information is secure

  • Trust that the information is being used for the benefit of other patients/families

  • Participants must have access to internet connection, Web browser and stable mailing address

  • What happens to my info? Will this somehow impact the level of care my family receives?

How can we help?

We’ve posited the idea of PFAConnect because we believe in the power of participatory design to change the ways healthcare is delivered. But we’re consultants, not providers. We’d welcome the opportunity to discuss this idea more in depth with you, even just to further troubleshoot the logic of online community building as it relates to PFACs.

We all know that PFACs can do better. Let’s create that Pretty Friggin’ Awesome Community together.