At the National Forum on Quality health care this week, I met a recovering angry mom and a former disgruntled patient working passionately with healthcare professionals to put patient interests and values at the centre of redesigned hospital systems.

Both Americans had their stories—Tessa, mother of a 33-year-old man suffering an ongoing 17-year bout of schizoaffective disorder, and Wal, seriously disappointed by the cancellation of his scheduled CT scan without anybody bothering to inform him after he had drunk contrast the night before and showed up expectantly the following morning.

After waging an angry battle with hospital authorities including writing multiple letters to multiple stakeholders, both had finally found a working rhythm with the hospital. Today they describe themselves as “constructively discontented people.”

Some progress

For some like Tessa, the road has been long, the journey hard, but by partnering with others, she has learnt to walk very far. There have been victories along the way too; families have greater opportunities to visit family members on admission throughout the day and the hospital allows her access to some clinical/staff meetings.

By seeing healthcare professionals at close quarters, including their reactions when they lose their patients, she has come to appreciate that her healthcare professionals actually do care about patients and their families. Tessa has also encouraged the hospital to look beyond patient care within the narrow confines of the emergency room, pointing out, “The process begins when I pick up the phone from my kitchen and call 911.”

As part of this redesign process, she allowed herself to be wheeled into the emergency room on a trolley in a mock session. Today, she has significantly reframed her thinking and approach, describing her current position as one of “laying down adversarial tools using data, science and personal stories.”

Changes

Wal has succeeded in getting the hospital to make changes such as hanging wall clocks in waiting rooms which, though small, have been meaningful to him. He is also now a passionate advocate for the hospital’s feedback system which allows all patients to provide written and/or verbal feedback after each visit on what could be improved. Somewhat defensive initially, the hospital attempted to explain detailed malfunctioning hospital processes to Wal. He simply did not care to know about the details, he told them. Just fix your system!

Increasingly, the global community of quality improvers is having critical conversations about how to redesign care processes around what matters to the patient instead of what the matter is with them. In places like the United States, it would appear that the formation of a Patient Advisory Council is the commonest systemic intervention. On these councils, patients and their families are having the opportunity to formally engage hospitals positively. Increasingly too, hospitals are borrowing from the hospitality and the service industries to improve the patient experience.

It was beautiful to see patients become the exerts in a room full of health professionals, some of whom asked for guidance from patients – “How do we support our own staff to be more effective in assisting our patients?”

But the Americans appeared very focused on facility-based care, with weak systems for engaging communities. This became clear when the conversation shifted to equitable access for underserved populations in the African-American, Latino and migrant communities especially. Addressing the concerns of patients that are physically present is great. But what about potential patients who do not have access to your modern facilities due to a variety of systemic bottlenecks?

Policy interventions

Within this context, policy interventions by countries like Ghana, and initiatives in Liberia were shared. Ghana has its CHPS (Community Health Planning Services) concept which plants a community health officer in a facility within the community built with community support. The community health officer manages a standard package of primary healthcare services with appropriate criteria for referrals as needed.

Ghana has also run a successful large scale improvement project –Project Five Alive!—which saw the formation of Quality Improvement teams with representation from community stakeholders such as traditional birth attendants, gender activists, taxi drivers, traditional authorities, licensed chemical sellers working productively with health workers to improve the under- five patient experience and health outcomes.

In post Ebola Liberia, a Quality Management Unit has been formed with a national level Quality Advisory Board. To give the patient a voice, community representation at all levels of the health system – National, County, District, and Facility – have been proposed for all newly formed Quality Management teams. In conclusion, it is worth recalling some inspirational quotable quotes from the patients and some hospital Chief Executive Officers (CEO).

“I really don’t care about the details of how your system works. All I care about as a patient is for you to fix your obviously inefficient system.”

“The voice of the patient is the best verdict of the workings of the system, which is why we regularly take feedback from our clients.”

A CEO who had learnt to take ‘risks’ to push for system redesign in the light of certain ambiguous federal regulations said, “our policy these days is to proceed until apprehended” while another CEO conceded that “Patient Advisory Councils are essential but not adequate.”