[2021-08-12] Patient activation
Today, I had my fourth call with my cancer coach from the Ottawa Regional Cancer Foundation, and we discussed an interesting concept that was new to me called "patient activation." I found several definitions for the term and liked these two the best: patient activation is "the knowledge, skills and confidence to manage one’s health" and patient activation is "a measure of an individual’s understanding, competence, and willingness to participate in care decisions and processes."
My coach told me that higher patient activation leads to greater self-care behaviours, better health outcomes and less use of healthcare services. In other words, when a patient has high knowledge, understanding, skills, competence, confidence and willingness to manage their health and participate in decisions about their care, they will take better care of themselves, enjoy improved health outcomes and ultimately use fewer healthcare services because they're staying on top of their treatment.
This was absolutely fascinating to me.
Exactly one year ago today, I wrote in Perpetually upbeat, that "there is neither evidence that a negative attitude can cause cancer (reassuring for any worrywarts out there) nor evidence that a positive attitude can increase the chances of beating cancer (disappointing for the perpetually upbeat like me)."
But maybe I had posed the wrong question. Instead of asking whether my having a positive attitude could change the progression of my disease, perhaps I should have asked whether my level of knowledge, skills and confidence to manage my health could make a difference. It would appear that it can.
My coach sent me additional information after our call, including a continuum by Insignia Health explaining the four levels of patient activation:
- Level 1 - Patients at this level are said to be disengaged and overwhelmed. They are passive in their treatment plan and lack confidence. Their knowledge is low, their focus on goals is weak, and their adherence to their care plan is poor. Their perspective: "My doctor is in charge of my health."
- Level 2 - Patients at this level are portrayed as becoming aware of their health and treatment but are still struggling. While they have some knowledge, large gaps in their understanding remain. They believe that their health is largely outside their control, though they can set simple goals. Their perspective: "I could be doing more."
- Level 3 - Patients at this level are characterized as taking action. They have the key facts about their condition and are building skills to manage their health. They strive to follow best practices and are goal oriented. Their perspective: "I am part of my health care team."
- Level 4 - Patients at this level are described as maintaining behaviours and pushing forward. They have adopted new behaviours, though they may still struggle at times with stress and change. They are focused on maintaining a healthy lifestyle. Their perspective: "I'm my own advocate."
My cancer coach explained that coaching helps people move up the continuum. It assists them in acquiring knowledge and skills they can use to meet their goals. One of my goals, for example, was to have a productive discussion with a breast surgical oncologist about the possibility of a preventive double mastectomy to lower my risk of breast cancer. My coach reviewed the questions that I had drafted for this discussion and added a few of her own. The result was an efficient and effective conversation with the breast surgical oncologist, which I wrote about in 2b or not 2b.
Among the resources my cancer coach sent me after the call was a study entitled Does patient activation level affect the cancer patient journey? It included this summary of results:
Higher activated patients are more than 9 times more likely to feel their treatment plans reflect their values, 4.5 times more likely to cope with side effects, and almost 3.3 times more likely to initiate a healthier diet after their diagnosis, than are less activated patients. Less activated patients are less likely [to] understand their diagnosis, to follow treatment regimens, and to be satisfied with their care.
Similarly, the introduction of a study on patient activation among breast and prostate cancer survivors indicated that people with higher patient activation are more likely than those with lower patient activation to exercise, eat a healthy diet, refrain from smoking, receive cancer screenings, have regular check-ups and take medicine as prescribed. People with lower patient activation are more likely than those with higher patient activation to say that they have unmet medical needs and to delay getting the medical care they need.
Level 4 in the patient activation continuum reminds me of something someone said to me in response to one of my posts: you are the head of your healthcare team. I absolutely agree. I included some ideas for playing this role in Managing your healthcare, but I'm sure there are many other ways to demonstrate high patient activation. Feel free to share your ideas, and I will compile the best in a future post.
