Skilled Communications Workshop

December 7, 2017

A PAF/NPAF event held in partnership with
the Mountain Area Health Education Center
Asheville, North Carolina

“We are at a moment when we see radical transformation in our systems and our approach to communications—because we have to. The focus must be on being present for each other and encouraging behaviors that promote resilience.”

— Amy Russell, MD, Mission Health

Introduction: The Roadmap to Consumer Clarity in Shared Decision Making

In May 2017, PAF/NPAF launched the Roadmap to Consumer Clarity in Health Care Decision Making. The Roadmap puts forth a model for co-creating health care with emphasis on skilled communications, coordination and navigation of care, enhanced utilization of existing and emerging tools and shared decision making (SDM).

Our ultimate goal is to make person-centered care a reality for patients, caregivers and providers across the range of clinical settings, disease states and treatment-related decision points. We chose to make skilled communications a focal point for our initial follow-up activities because this area is critical to every aspect of person-centered care. Both patients and providers often lack training, resources and opportunities to engage in the conversations that are the foundation for shared decisions and treatment planning. These discussions are vital to identifying the goals and values that inform and drive the process.

The PAF/NPAF MAHEC Skilled Communications Workshop is a prototype for developing a series of community based, interactive forums for improving awareness of the importance of effective communications and providing the tools to make this possible.

Goals for Making the Model a Reality

With the support of additional Roadmap funding from the Robert Wood Johnson Foundation, we are able to plan three Skilled Communications Workshops, addressing three distinct geographic areas and populations. Our common goals for these events are:

  1. Focus on one or more key areas that are critical to SDM in a wide range of clinical settings
  2. Engage community partners to develop programs that address specific issues for the populations they serve
  3. Create events and workshops that are highly interactive and participatory
  4. Leverage the events to develop “hands-on” guides and toolkits that can be disseminated to target groups and key opinion leaders
  5. Assure that the events and follow up activities include actual patient and caregiver’s voices speaking for a wide range of disease states, conditions and issues
  6. Involve Roadmap advisors and stakeholders from other areas in each workshop to assure ongoing participation, gain the benefits of their insight and expertise and provide a basis for continuity as we develop subsequent workshops and events.
  7. Utilize PAF/NPAF data for both the specific geographic area and the populations served to inform the planning, implementation and evaluation of the workshops

The Asheville Skilled Communications Workshop

We asked the Mountain Area Health Education Center of Asheville, North Carolina to partner with us for the first Skilled Communications Workshop. Kathy Foley, PhD, director of MAHEC’s Research Division had served on the Roadmap Stakeholder Advisory Group and was an active supporter of the Roadmap and its agenda. She agreed that her group would provide significant support for the meeting’s logistics (room, meals, AV support, PR), inviting key opinion leaders from diverse segments of the community and identifying speakers.

Led by Gwen Darien, executive vice president of patient advocacy, NPAF provided the overall organization and structure of the workshop, speakers, data, materials and brought several key leaders from other organizations and geographic regions to the meeting, including Carla Easter, PhD, of the National Human Genome Research Institute, Meg Gaines, JD, LLD of the Center for Patient Partnerships and Thomas Workman of the American Institutes for Research. These individuals contributed to the workshop and will also provide continuity in planning future events.

This partnership proved to be a very positive, mutually beneficial and productive collaboration, a true model for our future efforts. MAHEC leadership and staff made a substantial commitment to the success of this program, providing their expertise, knowledge of their community and enthusiastic support for the venue, food, AV and logistics.

The Workshop

Participants: Total attendance at the Skilled Communications Workshop was approximately 50 people. These included NPAF and MAHEC staff and invited members of the former Roadmap Stakeholders Advisory Group. MAHEC selected other attendees from a diverse group of community partners, advocates, health care providers and social scientists in the Asheville area. These individuals represented different disease types, interest groups and community-based organizations.

The Agenda (attached): NPAF and MAHEC developed the agenda to meet the goals stated above. The program included a wide range of participants addressing key topics related to skilled communications. We focused on providing ample opportunity for the attendees to participate. Two sessions, Telling Your Story and the Human Centered Design Activity: Building our Communications Toolkit were specifically designed to involve both the attendees and the speakers in a highly interactive, innovative forum. The panel discussions also allowed significant time for questions and contributions from the audience, addressing the broad issue of What are Skilled Communications? and the more specific issues related to The Asheville Model: Connecting Shared Decision Making to Health Equity and Empowerment. Meg Gaines delivered a keynote address on “The Real Meaning of Co-Creating Health”, and Carla Easter spoke to the special challenges to communities presented by “Genomics and Shared Decision Making.”

The format succeeded in eliciting a very high level of participation from everyone at the workshop. This included writing and sharing stories, comments that drew on the experience of the individual participants, questions and very active teamwork for the Human-Centered Design activity.

Five Key Points from the Workshop

“Pause, listen empathize, translate, collaborate, become partners.” Those are the key words the panelists chose when asked to come up with a single concept that is crucial to skilled communications.

  • Time is a barrier to communications–but there are innovative approaches that can address that issue. These include group appointments, better pre-appointment education and planning, and simple taking a couple of minutes to ask “what is important to you?”
  • Language matters. Making sure that patients and providers are using words that are mutually understood is critical to skilled communications and making share decisions.
  • Providers have stories too. It’s important not to neglect those stories and to give providers time and opportunity to articulate what is important to them as well.
  • Technology can help. Today, many people are comfortable using texts, apps and website to get information. MAHEC, for example, has a very accessible website that provides simple explanations for medical tests and their results.
  • There is no substitute for the relationship between patients and their providers. Those relationships are the basis for trust and for communications at every critical point during treatment and care.

Next Steps

We are excited by both the process and product of this first Skilled Communications Workshop and plan to follow up in several ways. We want to replicate the strong community focus and interactive nature of this program and bring it to additional regions and populations. We view this as an ongoing project in which we will continue to take what we learn and translate that knowledge and insight into usable tools and resources to advance person-centered care.

  1. We are planning at least one more workshop, tentatively in the Chicago area for Spring 2018. The goal is to identify a community partner and to target our efforts to the African American and Latino populations. This Workshop with include many of the same interactive program elements, involve Stakeholder Advisory members and involve a diverse group of locally-based participants.
  2. We have spoken with leadership from the National Medical Association about developing a Skilled Communications Workshop session for either their national or one of their regional meetings in Philadelphia. They have indicated a strong interest in working with us on this program.
  3. We will develop a Toolkit based on the Asheville meeting and continue to expand and update that product as we move forward, as well as disseminating it as widely as possible.
  4. We are planning to develop an online Roadmap community as a vehicle for sharing case histories and best practices, identifying resources and promoting collaborative efforts in to advance shared decision making and personalized medicine.

These programs reflect the ongoing commitment PAF/NPAF have made to building on and disseminating the Roadmap model as the core of our outreach program, and to making co-created health the standard of care. We look forward to working with partners who share this commitment in advancing person-centered care.

Why the conversation is so important

Kathy Foley

 

Why Am I an Advocate?

Sa’Brina Davis

 

Group Appointments

Amy Russell

 

View all 9 videos from the Skilled Communiations Workshop