Tessa Richards: “All I ask is that you listen”

Tessa RichardsIf healthcare was a patient, the diagnosis would be multimorbidity. There is a near terminal mix of fragmentation of services, failure to listen and respond to patients concerns, lack of compassion, patchy performance on protecting and promoting health, and unsustainably high costs. Simplistic perhaps, but fighting talk galvanises. Maureen Bisognano, president of the Institute of Healthcare Improvement, used a similar scenario to argue the case for “flipping” healthcare, at last week’s Quality Forum in Paris.

Step one, “shift 20% of healthcare to primary care,” she said, step two, “co-produce health with patients.” Co-production of health has become the buzzword of the moment. Policy makers have acknowledged that the determinants of health lie outside the health system. Also that engaging, and harnessing the experience, strengths, and motivation of patients, their families, and linked communities, and working collaboratively with them is essential to improving the cost effectiveness of healthcare. Easy to say, but dauntingly hard to do.

People’s hearts are in it, if the forum participants who made explicit pledges to improve healthcare are anything to go by, but that’s not enough. Nor is the publication of “patient centred” policies. It has to start, Bisognano and other speakers underlined, with a change of professional mindset. We need a move from a technocratic biomedical approach to healthcare to a personal and holistic one. Replacing the “what’s the matter with you” question with “what matters to you?”

By comparison with other sectors, most healthcare systems are still operating in the digital dark age, some speakers suggested. Bisognano, urged the meeting to “listen to Trevor.” Trevor, a teenage college student with type I diabetes was crystal clear (in a linked video) about his definition of health and what he needed from health professionals. “I don’t want diabetes to disrupt my life,” he said. And I want to be in charge “of managing it.” What he wanted from his care team was timely access to advice and information when required, via text and e mail. Don’t we all.

Ways of engaging and promoting participation by patients were discussed at several sessions. One led by Piera Poletti, director of the Centre for Advanced Education and Quality Improvement in Padua, started with a poem written by a patient with mental health problems.

“When I ask you to listen to me and you start giving me advice, you have not done what I asked … all I ask is that you listen. Not talk, nor do—just hear me … I’m not helpless … Maybe discouraged and faltering but not helpless.”

Energetic tweeting energised every session (#Quality2014). Poletti’s got plenty as she ran through the familiar gamut of ways to involve patients.These ranged from shared decision making and shared eHealth records to patient reporting of adverse events and patient reported outcome measures. PROMS as they are usually shortened to, have been around for ten years and in another session described as “bafflingly underused,” but potentially, “a hugely valuable tool” for improving healthcare.

Tweets from one of the very few patients/patient advocates at the meeting, were telling. Cristin Lind’s list of reasons why patients don’t come forward to partner with health professionals illustrate how challenging “co-production of health” is. They included the power imbalance between patients and doctors, patients views being dismissed or ignored, cultural barriers, and the failure to provide patients with practical or financial help to attend and play an active part in medical meetings.

Although there were no designated patient representatives as formal speakers, Michael Buist, professor of medicine at the University of Tasmania, spoke searingly of his own family’s experience. His views of the cause of his recent sudden postoperative collapse had been dismissed. So were the concerns of his wife about the reduction of foetal movements of their daughter; attributed initially by medical staff to her being “ a lazy baby.”

Witnessing his anguish over the death of his daughter Hannah was a powerful take home message. The trigger maybe, for one of the pledges made which was, “I pledge to treat every patient as if they were a much loved member of my own family.”  Surely a good starting point.

Tessa Richards is senior editor/patient partnership, The BMJ.

More from the Quality Forum: