Has the patient voice silenced others? Balancing voices for better health care
#PatientsIncluded is a mantra that many members of #hcsmca live and champion. In particular at medical and health conferences, the #PatientsIncluded cry grows louder and even led to the development of the Patients Included Charter (It will be published on May 1. See a preview here.)
Involving patients as experts in living with their condition and families has long been the missing link at conferences, meetings and decision-making tables within our healthcare systems. More and more organizations, institutions and conference organizers recognize the need (nay necessity) of including the patient voice and several are doing it well.
Stanford Medicine X, for example, is often applauded as a leading example of including patients and family caregivers from planning to presenting and attending the conference to disseminating learnings beyond the conference walls and hallway conversations.
The power and need of patients and family stories are undeniable. But what if the pendulum swings too far? This is what we both observed at Stanford Medicine X last fall. Several physicians shared with Colleen privately or hesitantly in public that they did not feel comfortable asking a question in the plenary hall at Medicine X following patient presentations and panels – that as an MD they felt they shouldn’t. Javed noted in his article in Future Practice:
“…There are patients present for nearly every moment onstage – a conscious expression that health care can’t be effectively conceived without keeping its purpose (health for patients) as the central focus.
Sometimes this atmosphere makes conversations difficult. I fear that the pressure to be politically correct might prevent honest discussions about the barriers to delivering the desired kind of care. …”
Our purpose is not to single out Medicine X, but rather use it to illustrate a situation that may be happening “off-stage” as organizations forge ahead with patient and family engagement to improve healthcare delivery.
Health is a personal experience. Health care is a team effort. How do we reconcile the two?
“Nothing about me, without me” makes a lot of sense, given that the main purpose of a health system is to meet the health needs of patients and families. Figuring out what “health” means to a patient and what health goals are important helps identify what the patient, their supporters, the health providers and the health system need to do. If we don’t understand this, the health system funders (the provincial governments in Canada), institutions and providers might make decisions and work in ways that don’t accomplish the health goals most important to patients. And making formal room for patient and family views can help overcome situations where people feel intimidated or unable to speak up during the course of their individual health journey. All in all, it seems pretty logical to include all the people affected by health care decisions in these conversations.
But has the power of the personal rendered mute others who share in the health experience medically? When faced with a patient’s intense and emotional narrative of their health experience, institutions and providers may feel uncomfortable questioning the broad applicability of the goals an individual patient describes, or the priority of addressing that goal rather than other competing patient health outcomes.
On April 29th at 9pm ET (time zone converter), #hcsmca would like to flag an issue that may be happening and may not have yet bubbled to the surface of public conversation – before the pendulum swings too far. Join us to seek answers to the following questions.
T1: Has the rise of the patient voice silenced or enabled the other voices in healthcare? How? T2: With the rise of the patient voice is it more difficult to have an unbiased discussion around strategies and priorities when identifying health solutions? T3: Are the sustainability of demands on providers and the system given necessary weight in these joint discussions? T4: How might we create an environment that empowers patients and doesn’t silence other voices?
- T1: Have you been involved in healthcare system change or research where a representative voice was silenced? #hcsmca
- T2: How might patient advocates/activists have inadvertently muted voices? Whose? From which healthcare sectors? #hcsmca
- T3: How have public conversations about health solutions changed since patients have become more vocal online and off? #hcsmca
- T4a: What new “rules of engagement” between providers and patients are emerging? #hcsmca
- T4b: What new rules of engagement need to emerge? #hcsmca
- T5: How might we create an environment that empowers patients and doesn’t silence others? #hcsmca
Read the April 29 #hcsmca transcript.