Judith Hibbard, Professor Emerita and Faculty Fellow at the Institute for Policy Research and Innovation at the University of Oregon, developed and tested the patient activation measure (PAM) in 2004. Its purpose was to assess “an individual’s knowledge, skill, and confidence for managing their health and health care.” Patients answer a series of questions and receive a score between 0 and 100 that reflects their confidence in managing their health and health care. Today, the PAM is licensed by the US company Insignia Health, which charges a reasonable fee for licensing.
Hibbard used the measure to study levels of activation among US adults and found that just over 20% were in the lowest two levels. Later studies in different countries have found varying rates between 20% and 40% of the population at low and very low levels of activation.
In the management of long-term conditions, higher activation scores are positively correlated with adherence to treatment and condition monitoring, as well as obtaining regular care associated with the condition. Research undertaken with different patient groups (HIV, diabetes, mental health, etc.) has found that more activated patients generated fewer costs, have fewer ER visits and hospitalizations, and better experiences of care. They also have better outcomes. A study of HIV patients found that every five-point increase in PAM scores was associated with a significant improvement in CD4 counts, adherence to drug regimens and viral suppression.
In the report published in May 2014 by the King’s Fund, Supporting people to manage their health: An introduction to patient activation, Hibbard and co-author Helen Gilburt look at the different uses of the PAM. These include assessing programmes designed to increase patient activation, but also targeting healthcare resources to where they’re needed most.
Programs that are effective at raising levels of patient activation focus on the development of skills and on building confidence. The Stanford Chronic Disease Self-Management Program (CDSMP – also known as My Tool Box at the MUHC) is among the interventions that have been shown to increase patient activation, with improvements in self-management measures, clinical outcomes (A1c, LDL and BMI) and decreased hospitalizations. Effective interventions are often those that are tailored to an individual’s level of activation. Changes in PAM can be used to assess a program.
PAM can also be used to differentiate care and apply resources where they’re needed most. Some of the examples cited in the report are differential strategies for detecting urinary tract infections in patients with chronic conditions. The more activated patients were given home testing kits, while less activated patients were scheduled for more frequent follow-up visits. Use of medical assistants to meet with less activated patients before and after a doctor’s appointment helped them get the most of the visit and increased their ability to take the steps required following the visit. In 30 US states, support following hospital discharge is now adapted to a patient’s level of activation, assessed through the PAM score.
Hibbard and Gilburt recognize that the policy foundation must be in place to recognize the value of patient activation. Investment is spurred when a health system shifts focus from acts of care to outcomes. “In England,” Hibbard states, “there has been a move from measuring success by the number of people who receive treatment to measuring success by the number of people whose health improves. This means that it is increasingly important to demonstrate the effectiveness of care and to intervene in order to maximize health outcomes.”
Health information technology strategist Leonard Kish famously said, in a 2012 blog: “If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it.” Kish’s catchy phrase has powerful implications, especially when the bit about malpractice is included, which it isn’t in many citations. If a care model is found to produce highly significant improvements in outcome, is it not unethical not to make it available to everyone who might benefit? Models of care provision and care trajectories have not traditionally been considered as part of the basket of services we’re all equally entitled to receive under Canadian medicare. Putting them on the same plane as drugs, surgeries and doctor visits may help us weigh the value of different investments for improving health outcomes.
— Health Innovation Forum