Patient Advisory Councils – Know Your Customer

Charles Denham, M.D., chairman of the Texas Medical Institute of Technology (TMIT), shares his wisdom on the formation of patient advisory councils to support quality improvement. TMIT is a medical research organization, founded in 1984, dedicated to accelerating performance solutions that save lives, save money, and build value in the communities we serve and ventures we undertake. TMIT applies the Institute of Medicine's design principles of patient-centeredness, evidence-based medicine, and systems performance improvement.

Harm due to healthcare system failures and medical errors strikes one in four families, causing more than 200,000 preventable deaths and inestimable suffering in the U.S. (1) Further, quality improvement programs may not be having the desired improvement we would have hoped; thus, it will take much time before healthcare harm is dramatically reduced. (2) We believe that one untapped pathway for improvement is leveraging the power of hospital boards to develop hospital patient safety councils. 

We know that the new emphasis by the Centers for Medicare & Medicaid Services (CMS) on engagement of governance boards and development of patient councils is new for Quality Improvement Organizations (QIOs). Not every QIO will be ready to make the leap and develop these programs. However, we do know that such programs will save lives.

We’d like to offer some reality-based advice toward the engagement of hospitals in developing patient councils. This is an area of great fear for all. However, risk can be dramatically reduced by having guidance from and a good understanding of patients and families who are interested in being involved in such programs. A number of organizations have been successful at engaging patients and families in their quality improvement efforts, like the Dana Farber Cancer Institute in Boston and the Mayo Clinic in Rochester, Minn. which recently shared their successes and advice in a national webinar organized by TMIT entitled “Engaging, Activating, and Partnering with Patients and Families.”

Most people interested in participating in such programs are either caregivers who want to contribute in a positive way or non-clinical consumers who have been involved in an adverse event.

After a healthcare harm event happens, healthcare consumers can be divided into two groups:

1. Healing: those experiencing crisis, grief and anger immediately after the healthcare harm event and
2. Ready to Serve: those who have moved into a psychological state where they are capable of action to improve the healthcare system.

Both the Healing groups and the Ready to Serve groups typically seek meaning and fulfillment by serving others through helping improve the healthcare system that failed them. The desire to reduce preventable harm is universal. Yet, some healthcare consumers need to express their stories and have cathartic experiences that are a part of the natural healing process. The experience of the TMIT team, after having worked closely with patient advocate leaders for many years, has been that there are terrific benefits that can be provided by both groups. Organizers have had very poor results, however, when attempting to work with individuals who are still grieving and haven’t had a chance to process their trauma.

Hence, it is imperative that hospitals develop programs that help individuals move from grief to action, and that incorporate best practices from experts in the field of bereavement.  Such programs would not be advisory councils but would provide real insights into the harm that can be generated through medical errors and systems failures. 

In most communities, the two consumer groups informally assemble. If quality improvement experts understand the nature of both groups, they can then assist hospitals in the selection of consumers who will help design programs that meet the needs of both the organization and the consumers.

We believe that the best advisory councils are comprised of consumers and families who have healed sufficiently to make positive contributions to performance improvement and who can use their personal stories to drive awareness without further pain to themselves and to inspire leaders and caregivers to focus on improvement.

One performance model TMIT has developed over the last 20 years, the 4 A Accelerator Model (3), has been used with more than 400 venture opportunities and has been included in the survey we designed for the Leapfrog Group and their national scorecard.  It has also been used in the design of the leadership practices of the National Quality Forum Safe Practices for Better Healthcare. (4) This tool can be used by QIOs to assess target organizations for their probability to succeed and drive improvement. The model identifies performance gaps along four dimensions: awareness, accountability, ability, and action.

Essential to using the model for accelerating new innovations is the concept of performance solutions. Performance solutions are individual or combinations of products, services, and technologies that enable best practices, as assessed by established process measures, outcomes measures, or structural measures.

Clearly, patient and family councils cannot be viewed as we would medical devices or pharmaceuticals. However, the 4 A Accelerator Model does have value to organizing thinking. Awareness means how well leaders, middle management, and frontline people are cognizant of performance gaps. Accountability means who is personally responsible for closing the gaps or implementing solutions. Ability refers to the capability of key players to execute and refers to the knowledge, skills, and investment that may be required. Finally, action refers to the line of sight activities that must be taken to close the gaps. 

In the case of implementing patient and family councils, we are addressing an entirely new innovation, and each organization will likely want to define the vision and mission that they aspire to achieve. TMIT has run national webinars on the subject and routinely posts transcripts, audio recordings, and slide sets that capture the messages from patient council thought leaders.

Once a team understands what the thought leaders and high performers in patient and family council development have done, they can lay out a game plan.

The 4 A Accelerator Model can be used to generate awareness regarding the potential value; the right staff can be charged with accountabilities; resources can be applied, such as site visits or learning programs that will enable the teams to do what is necessary to get started; and finally, planning can be undertaken for direct action toward calendar milestones.

Storytelling: The Secret Weapon

Many years ago, I asked the leader of a very high-performance company: “To what do you owe your success?” He responded, “by telling stories.” ‘‘Story power’’ lies in the ability to change or reinforce the behavior of others. The relatedness of rhetoric can change a person’s destiny, drive the success of a team, and even define the history of a nation.

QIOs need to become role models for making the convincing argument that both leadership and storytelling are performance arts. Combining the reason of analytics with an emotional call to action can be a force multiplier. Stories can be your leadership secret weapon. Conversely, stories that others tell about hospitals can be invisible secret weapons against them. If leaders behave counter to the values held by dedicated caregivers, they will lose them as supporters and, worse, will cause the caregivers to work against them.

Some of the greatest gifts that patients and families in advisory councils can bring to hospital boards are their stories. Hospital leadership can translate the power of new stories to action. Again, the best contributors will be the patients and families who have sufficiently healed in order to bring such stories to organizations in the spirit of improvement and not anger.

Some will, some won’t, so what’s next?

Entrepreneurship success, whether commercial or social, is a numbers game. We believe that persistence, coupled with knowing your market and picking the highest probability targets for success, is key. We have found that careful research of needs, pain points, aspirations, and even failures of potential performance partners is absolutely vital and never a waste. Too often, however, we are measured more on activities and less on results.

Winning is not about presentations; it is about closing deals. In social entrepreneurship, it is about convincing a leadership team to invest resources in your vision and plan for them. 

When the topic of opening up the backrooms of their hospitals to patients and families is broached with hospital leaders who have never done so, fear is palpable. Unfortunately, healthcare harm is so common that everyone is afraid of what could happen. The only way to combat this is by appealing to the head with data from great organizations that have successfully teamed with patient advocates, like Dana Farber, which has not had a single lawsuit since they established their program; and by appealing to the heart through stories that illustrate how wonderful improvements have come from such programs instituted by high performers.

Patient and family councils are a new area for everyone. Do your best to learn both the art and the science of great programs. Make sure you help hospitals understand why patient advocate selection is important and how you can minimize the risk of working with those who are still healing from adverse events.

In Closing

Hospital leaders have little time left to decide who they are and what their organizations are going to be like. This is a defining moment. It will define them, or they will define it.

In closing, critics of the CMS priority on governance board engagement and development of patient safety councils will abound.  However, we want to remind you that great organizations constantly have to face the brutal facts and overcome them in order to remain great.