Beth Lilja is the CEO of the Danish Society for Patient Safety.
Men did not get access to the delivery ward because obstetricians and midwives invited them to take part; they got access to be present and take part in their children’s delivery because the mother wanted them to be there. They were invited inside because it was a priority for the women’s movement and because a few friendly supporters from inside healthcare thought it was the right thing to do.
History has showed that the power of social movements is enormous. These days, we are celebrating the 100th anniversary of Danish women’s right to vote, or as the women’s movement is expressing it, “We did not get the right to vote – we took it.”
So how can this force to create change be used to improve healthcare? How do we change the balance of power between the system and the people? Several initiatives currently take place using this method. NHS Change Day (changeday.nhs.uk) is one example. On March 11th, hundreds of NHS staff, patients, carers, and friends pledged the actions that they are taking to make a change for the better in health and care. Change Day now takes place in a number of countries across the world – Great!
Hello Healthcare is another initiative inspired by social movements. Hello Healthcare is mobilising patients, their carers, and friendly supporters from inside healthcare to create the power they need to reach a shared purpose of patients and family centeredness.
So what does this take? Knowledge, courage, and people!
Knowledge is power
We know that when the patients are fully informed about treatments, risks, and side effects, they often choose differently than their doctors’ routine recommendations. Unfortunately we also know that one out of four patients has unanswered questions and concerns when discharged from the hospital (“Patients’ perceived barriers in communication with the staff – A questionnaire among patients”, Center for Patient Experience and Evaluation, The Capital Region of Denmark for Hello Healthcare, 2014). We therefore need to empower patients to have a say in decisions; to create a new norm that supports that.
Far too many patients experience that when they come home after an outpatient visit all the questions that they could not think about in the clinic suddenly pop up in their head. This is why Hello Healthcare has developed a tool Just Ask – a small booklet of questions other patients have found helpful in their care, such as, “Could you please explain it another way?” “Is there an alternative?” and “Could my wife be present during rounds?”
This tool is distributed through many channels: digital media, at TV screens in hospital waiting rooms, soon also in pharmacies, and in August one region will run a 12 second video about the questions in all the public buses.
Strong patients and healthcare staff that are “friendly supporters” (ie our patient ambassadors) help kick start this change. As a strategic communication action our ambassadors are important. They give their personal advice in public and recommend patients to speak up about what matters to them.
The idea is that if more and more patients and their carers meet healthcare with the expectation that it is legitimate to be part of the decision making, healthcare will accommodate and eventually welcome and stimulate active and engaged patients. In the beginning, the resourceful patients will act as ice-breakers for the less resourceful patients.
Hello Healthcare works in partnerships with people and organisations who share our vision, and in this way the initiative will grow over time to become a powerful movement. We work closely together with partners such as the Danish Medical Association, Junior Doctors, Danish Nurses’ Organization, The Cancer Society, and a number of leading patient organisations.
We believe stories have the power to change the world. We want to give the patients a voice. To increase patient safety by collecting and sharing experiences, advice, knowledge, tools, and inspiration that will help you, as a patient or relative, to avoid mistakes and reduce silent misdiagnosis.
On Facebook, patients tell their own story, and read and comment on other patients’ stories. This is how we build the sense of togetherness, common purpose, and involvement which we believe to be essential.
The next revolution
In the old days, women demanded to have their men with them at the delivery ward. It is a story with a happy end because the men gained access. The men, of course, know the women better than the staff.
Nowadays, many patients demand to see a development of the relationship with healthcare. Patients want a say. And we believe patient safety and quality will improve as a result. So let’s change the balance of power. Let’s create a new norm where it is natural for patients to say, “Hello Healthcare – this matters to me!”
Hello Healthcare is a cooperation between Danish Foundation TrygFonden and The Danish Society for Patient Safety.
References
- NHS Change Day http://changeday.nhs.uk/
- “Patients’ perceived barriers in communication with the staff – A questionnaire among patients”, Center for Patient Experience and Evaluation, The Capital Region of Denmark for Hello Healthcare, 2014.