Patients now have higher expectations of us health care professionals, and we have to meet those expectations, said Donna Fitzsimons, PhD, FESC, professor of nursing at the School of Nursing and Midwifery, Queen's University Belfast.
With the advancement of technology, newer resources like wearable digital health devices and electronic health records are being used to record patient-reported outcomes (PROs). Donna Fitzsimons, PhD, FESC, professor of nursing at the School of Nursing and Midwifery, Queen's University Belfast, explains how patients use technology to educate themselves and improve the shared decision-making process.
How do newer technologies such as wearable devices enhance the collection and utilization of PROs in cardiovascular medicine?
Over the last decade or so, we have witnessed a real growth in the use of technology and wearable apps, for instance, to capture data. That gives us a great opportunity, but it also has some threats, because these outcomes can be laced with artifact and we need to be sure that we are actually evaluating something that is reliable and valid. We have a job to do, I think, to work in partnership with patients to create tools that they are willing to use that are acceptable to them, and that they find easy to integrate into their day-to-day life if we want to observe those outcomes over a longer period of time successfully with fuller levels of compliance than we do already.
In terms of data capture and how we access information, this is a really topical issue right now. The health data space is really important because, as health care professionals, patients tend to trust us a great deal, but we also have to make them aware that major companies like Google are also able to monitor their data. And we need to have a robust system of transparency that allows the patient to know where their data is being used and what it's being used for. Also, we need to protect GDPR [General Data Protection Regulation] and, of course, their personal information within that context. But generally speaking, when we consult with patients, and within the ESC we're really proud of the ESC patient forum, and when we talk to them, they almost expect doctors and nurses to be using data to do research and to get better treatments and pathways for patients in the future. That is an expectation whenever they give us data.
So we need to work, as I said, really closely with patients to understand their preferences in this respect and also to be really transparent and honest with them so that they can continue to trust us and move forward together in a relationship where we get better solutions and better ways of measuring the outcomes that we're currently developing.
In your experience, what is the patient’s role in patient-centered care?
I think one of the key elements in patient-centered care is around shared decision-making, and that's something that we emphasize very much as health care professionals, because the days of "doctor knows best" or more or less over. People are becoming more and more conversant with health care information through the Internet and through Google and other search engines. They have higher levels of expectations of us, so we have to meet those expectations with an opportunity for patients to become educated and to understand better the treatment choices that we can offer them. This is particularly important for ethnic minorities, because very often, they don't have the same levels of health literacy or the same resources to draw on as other people. I think as health care professionals, we do have a duty of care to make sure that we are offering a more equitable service to the patients that we serve.