Patients and Families Included

By Jason A. Wolf, Ph.D.

Just a short, but incredibly exciting 5 years ago, I was writing my fourth patient experience blog in what has become a monthly occurrence. In that blog I introduced the definition of patient experience created by early contributors to The Beryl Institute community. In those first months of our work we were focused on reinforcing some fundamental ideas and values that have remained at the core of our work at the Institute since that summer we got underway.

In introducing the definition we offered,

“A positive patient experience is created by partnering with patients and their support network (i.e., families or caregivers) to anticipate needs and exceed expectations, recognize the individuality of each patient as a decision maker, form a caring, compassionate and lasting relationship.”

From those very roots we have operated, not from the perspective of providers only, or espoused a singular model or organizational perspective. Rather, we have comfortably left that to those with personal or business interests in what they saw and see as the potential of the patient experience marketplace. Our belief was and remains that the ability to improve the patient experience at a global level is grounded in collaboration and partnership, a welcoming of all perspectives and encouraging open sharing of ideas across segments of healthcare, organizational boundaries and even national borders. This philosophy has led to the largest community of practice dedicated to patient experience improvement, now almost 35,000 people strong representing almost 50 countries around the globe.

The significance here is that from the very beginning of our work we have operated from the mindset that patients and families are partners in the overall experience conversation, or simply stated, patients must be included. I offered this perspective as recently as my Hospital Impact Blog last week, but perhaps more importantly have lived it through our work as we have continued to learn and grow as a community. These efforts have been realized through the inclusion of patient and family voice on our boards from the outset, in our establishment of our Global Patient and Family Advisory Council (GPFAC) and the cutting edge work they continue to push us to explore (including some exciting news to be announced later this month), and they have been seen in our provision of learning and content from webinars and papers, to Patient Experience Conference itself, which has included patient and family voice on stage, in breakouts and in participation for the past few years.

It is for these reasons and grounded in our founding values that we are excited to also reinforce our commitment to the formal efforts around having patients included in healthcare gatherings. The phrase “nothing about me without me” is not new to healthcare, but what is emerging is a more critical intent on ensuring the consumer voice is engaged and included in the broader healthcare conversation – not simply around individual episodes of care, but in the very discussion of policy, procedures and processes that impact all engaging in healthcare globally.

For this reason, “patients included”, is much more than a nice phrase, it is our commitment and should be the commitment of so many other organizations espousing to include or more significantly represent the patient and family voice in healthcare. As a community comprised of all voices, we believed it was important to reinforce this important point.

The “patients included” movement was inspired by an experience and subsequent blog authored by a virtual colleague and thoughtful healthcare leader Lucien Engelen. He offers in recounting the roots of this effort, “When it was my turn to deliver my keynote, I asked the audience ‘How many patients are present here?’ Not one, it appeared. That there should be so much talk about what patients need and want without them being present prompted me to take action.”

The action resulted in the “Patients Included” movement and most recently a full charter guiding a true patients included effort around healthcare events. The charter, created by the voices of patients, caregivers and healthcare leaders in Spring 2015, calls on healthcare events to commit to the following:

1. Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.
   • The Beryl Institute Patient Experience Conference 2016 breakout session review committee includes members from our Global Patient and Family Advisory Council.
2. Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.
   • The Beryl Institute Patient Experience Conference 2016 keynote speakers includes patient and family voice and perspective. In addition, when sessions are selected late August, they will also reflect patient and family representation.
3. Travel and accommodation expenses for patients or carers participating in the advertised programme are paid in full, in advance. Scholarships are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.
   • The Beryl Institute Patient Experience Conference 2016 offers patient and family scholarships to conference participants to support engaging more patients and family members in the overall patient experience conversation. In addition, patient and family voice throughout our conference keynote speakers are fully covered for fees, travel and accommodation.
4. The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.
   • The Beryl Institute Patient Experience Conference 2016 will accommodate all disability requirements of conference participants for all parts of the program elements.
5. Access for virtual participants is facilitated, with free streaming video provided online wherever possible.
   • The Beryl Institute Patient Experience Conference 2016 will provide conference access and updates to virtual participants through social media and the #PX2016 hashtag. Conference participants actively engage online via social media and conference presentations are made available to participants after the event.

While not every organization may be able to accommodate these commitments due to constraints or other considerations, they reinforce a powerful statement on what including all voices and providing the access to do so truly means. At The Beryl Institute, we ourselves have met these very commitments for our own Patient Experience Conference. Patients and families contribute to program development and review and are critical voices on stage and in breakouts. Scholarships, though modest are provided and accessibility, one of our core operating values, is reinforced, including virtual access to the extent possible via social media and other means.

We do this for more than it being the right thing to do. As a community of practice committed to experience improvement, we also believe that which we espouse and encourage in organizations behavior, we must be willing to do and model ourselves.

Patients included is more than a nice slogan or a feel good effort, it is a fundamental premise to executing on the best in patient experience efforts in healthcare today. We welcome the opportunity as we continue to grow to ensure we maintain this perspective and challenge and encourage the patient experience community and the broader healthcare community to take note. Patient and family voice matters in our ability to provide the best in outcomes, it has and always will.

Jason A. Wolf, Ph.D.
President
The Beryl Institute