Patient empowerment
Dr Paul Shannon is a practising NHS consultant anaesthetist with an extensive clinical leadership record in the NHS at local, regional and national level. He is a member of the new Yorkshire and Humber Clinical Senate Assembly. His passion is to improve patient care.
I once asked an eminent doctor why he didn’t publicise the shocking figures of avoidable patient deaths in the NHS that he’d just presented to us at a closed meeting. He answered, “how could I; can you imagine the outcry?” Indeed, I could imagine the outcry – from politicians, professional organisations, and even patients themselves. And that was really the point of my question; the energy released would be disruptive and facilitate change.
It’s in this context that the statement by the Secretary of State for Health is remarkable, that 6,000 lives could be saved each year by improving safety in the NHS. Mr Hunt is promoting “openness” and this is the first step to patient empowerment; to let the public know what’s going on. In other words, share the data with them. Knowledge is power, so empowering someone involves giving them the same information that you’ve got. Knowledge is organised information.
Show them the data
“Discontent is the first step in the success of a man or nation” (Oscar Wilde)
Patients need to know how dangerous healthcare can be. They need to understand that all hospitals are not alike, not all doctors are competent all the time, and not all nurses are compassionate all the time. In short, they need to become discontent with the status quo.
But where can they get the requisite information? In general, data is held by professionals and carefully dispensed to patients. It’s often a paternalistic relationship, like a parent/child transaction. Just try getting access to your records. You will be treated as a nuisance, or as a “rebellious child”, and punished by having to pay for the privilege! It will be made as difficult and laborious as possible so that you don’t ask again.
In reality, it is easy to give patients ready access to their records, and some countries do this already, but commonly it is “cumbersome”, or somehow considered just plain “wrong.”
Sensational
“I never travel without my diary. One should always have something sensational to read in the train” (Oscar Wilde)
As a doctor, I’ve never come across a patient who doesn’t want to read their medical records. Human beings are fascinated by their own condition and by their own lives, and especially by what other people think of them! Harnessing this natural self-interest is a good way to involve people in their own care; it’s a natural “pull factor.”
Once lured in by curiosity, they’ll stay to contribute and learn. I recently held a consultation with a patient with a chronic haematological condition. I asked her what her latest test result was. Of course, she didn’t know, so we looked it up on the hospital pathology system. Seeing her results made her feel like she was being shown something illicit! She said it was the first time in her life that anyone had shown her her own results. She was delighted and intrigued to know more. That’s a pull factor.
Another pull factor is correcting and updating data. Usually, this is done in the form of amendments so that original information is not lost. Patients are sometimes horrified at the errors within their records. This alone is a good reason for patients to see their records, to cleanse wrong information and improve quality.
Choose the best, or avoid the worst?
When a doctor, or their loved one, has a medical problem, they ask their friends, “who should I go to?” or, “who should I avoid?” They know there’s wide spectrum of performance, so why don’t ordinary patients deserve this level of knowledge? Of course, it’s mainly word of mouth opinion because the hard data to substantiate it just doesn’t exist, or isn’t easily accessible. Nevertheless, I’d hesitate to be treated by a doctor who never treats his/her colleagues! League tables are a great way to present performance data easily. Just like in sport, no doctor wants to be in the relegation zone!
In the past, the NHS has tried in various ways to push information towards reluctant patients. Similarly, the Department of Health has tried to encourage the NHS to look at performance data, which the doctors happily rubbish. Now, it’s time to look at the other end of the pipeline and utilise the power of the consumer to suck as much information as they want and need out of health IT systems. As in other industries, patients, as consumers, will demand better access to information streams about the quality of services and doctors, which will allow them to contribute to their own health and well-being. And, doctors will want to know how they’re performing. In the end, better information produces better decisions for all.
