There is a growing consensus based on a substantial evidence base that the more involved people are in their own health and own care can profoundly affect how people view themselves and their outcomes. Patients need more than just information, they also need support to become more informed decision makers and managers of their own health.
Activation refers to peoples’ ability and willingness to take on the role of managing their health and healthcare. Research on patient activation suggests that individuals go through phases or levels on their way to becoming effective self managers. At the first or lowest level people tend to be passive and may not feel confident enough to play an active role in their own care. The first step is believing an active role is important; at the second level people start acquiring the basic knowledge and understanding of themselves and their condition and begin developing confidence in their own abilities. This might include being brave enough to discuss your concerns with doctors and nurses even when they don’t ask about them – questions such as “what does this medicine do?” are easy, questions relating to impact of treatments on body image or sex far more difficult. The third level is reached when patients are taking action such as maintaining the lifestyle changes for health that have been made. Staying the course is the fourth stage; at this level people have adopted many of the behaviours to support their health and may even be able to maintain them in the face of live stressers. They can figure out solutions when new situations or problems arise with their health condition.
Activation can be reliably measured and more importantly is changeable over time. People who get support for being proactive about their health and care from their general practice or kidney care teams, from colleagues and managers at work and from friends and family tend to be more activated and to engage in healthier behaviours and choices. Gains in activation are followed by improvements in experience and outcomes and as a consequence the amount of healthcare and costs fall, even though people with chronic conditions who are highly activated are much less likely to report unmet health needs compared to those with lower levels of activation. People who are less activated are less likely to get around the barriers to good care and have less success in navigating the highly complex and often confusing healthcare system. Activated patients have better blood pressure control, less depression and live longer.
So, GET ACTIVATED, take the first step, find out what your medicines do, find out what your options are, get your questions answered in your consultation, take charge of your own health and care.
Individual patients may well not be able to do this alone. Doctors nurses, dietitians, pharmacists, indeed the whole care team have a role in promoting and supporting patient activation and care planning. The healthcare professionals should check with patients after each encounter that the patient understands what has been discussed – we are often on different pages! More activated patients have more positive and supportive healthcare experiences. Kidney patient associations should all take a role in helping care teams become more supportive in helping individuals take control.
Published in the Royal Free Hospital KPA newsletter July 2011