Engagement of patients and families resides at the core of the Framework for Safe, Reliable, and Effective Care
. That is, all the effort involved in making care safer and more reliable should be in the service of engaging patients and families, and realizing the best outcomes for them across the continuum of care.
In safe and reliable organizations, patients and families are as much members of the care team as clinicians and other health care staff. Below we describe ways in which patient and family engagement dovetails with the framework.
Leadership and Accountability
For each care episode, patients and the rest of the health care team need to agree on a set of goals and clearly define roles and accountability for what it takes to achieve those goals. Clinical team members advise on the clinical components, and patients give their perspectives until there is agreement on what constitutes a reasonable goal. When people are in accord and feel accountable, there is a higher likelihood of success. For example, for an individual with chronic pain, the person and the treatment team may determine that being 100 percent pain-free is not a reasonable outcome, whereas reducing the pain to a sustainably tolerable amount is an achievable goal. With all team members pursuing the same goals and having the same expectations, it is easier to reach targets and recognize success.
Patients should feel psychologically safe to share their concerns with the clinical team. Opinions, ideas, questions, and concerns expressed by patients are received openly and without judgment. The response of the clinical team, beginning with the first clinical interaction, sets the tone for the ongoing relationship.
Patients should also be encouraged to be transparent about their clinical signs and symptoms and treatment adherence. This information enables clinicians to provide appropriate and adequate treatment. Without psychological safety, a patient might be tempted to hold back for fear of being shamed. For example, if a patient feels the doctor will be angry or disappointed if he or she does not completely follow a medication regimen, then the patient may not be totally honest about whether they are taking medications as indicated and, if not, why. However, if a physician encourages the patient to share complete information and does not react negatively, it fosters more comprehensive and accurate information exchange.
As with negotiation between clinicians, the health care team should engage in collaborative negotiation with patients and families. To help the care team determine if the patient has the will to make changes, this involves a shift from asking, “What is the matter with you?” to asking, “What matters to you?
” A key aspect of successfully achieving health goals is knowing the patient’s and family’s priorities, as well as their worries and desired outcomes. For instance, an elderly patient who takes care of her grandchildren on a daily basis may refuse to take her hypertension medicine because it makes her dizzy, lessening her ability to provide care. Knowing this information, the care team can then identify a solution that preserves her health and also meets her goals.
Transparency with patients and families is important because it removes the stigma of clinical team infallibility. When serious clinical adverse events occur, transparency is especially important
; the risks of the health care organization not responding to such events in a timely and effective manner include loss of trust, absence of healing, and no learning from improvement.
As individuals understand that the health care organization is trying to improve processes to enhance safety and reliability, patients will recognize the need for their engagement in the system. For example, if physicians are transparent about not always following up to communicate test results or make referrals, then patients might be more activated to take responsibility for directly obtaining their tests results when patient portals are available to them, and to otherwise close gaps when they occur. This is not to suggest that organizations should rely on patients to follow up, but that transparency about potential gaps can serve as a component of a reliable process.
With regard to reliability, patients want to be confident that they always receive care that is safe and effective. No one wants to receive “less than perfect” care — or worse, experience unintended harm from their care. Patients are an important asset in uncovering ways to develop more reliable processes that lead to long-term sustainability of clinical and operational excellence in health care organizations.
Improvement and Measurement
Patients are valuable assets when it comes to improvement because they bring their unique perspectives, particularly about how they experience care delivered by an organization. One way to involve patients and families in improving care is to ask for input on their experiences and ideas, and share data with them about ongoing improvement efforts. Run charts are one easy-to-understand method for sharing data on measures that matter to patients (e.g., waiting time). Posting run charts of data a team is tracking in visible patient-accessible areas (like the waiting room) is one way to engage patients and families in improvement, and also builds transparency. In many progressive health systems, patients also participate directly as members of multidisciplinary improvement teams.
To ensure that patients and families are invested partners in their care, organizations must keep in mind both their clinical and social needs. Although many of the social aspects of care are difficult to understand and address, organizations cannot overlook that this is a significant predictor of clinical success. Committing to a patient-centered culture and learning system helps ensure that organizations get this work right.
Without engaging patients and families in the two overarching framework domains and their respective components, organizations are likely to fall short of their goal to build systems that provide safe, reliable, and effective care.