Patient activation: New insights into the role of patients in self-management
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This presentation by Helen Gilburt, Fellow at The King's Fund, looks at why some people are active at managing their health while others are quite passive, and how levels of patient activation impact on health outcomes. It was presented at the MS Trust Annual Conference in November 2014.
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Patient activation: New insights into the role of patients in self-management
- 1. Patient activation New insights into the role of patients in self-management Helen Gilburt, Fellow, Health Policy
- 2. What is patient activation Why are some people active at managing their health and others are quite passive? › Has the knowledge, skills and confidence to take on the role of managing their health and health care
- 3. The Patient Activation Measure
- 4. Who is this relevant for? Validated in across different populations and health conditions Full range of activation in any population and across health conditions Distinct from socio-demographic status, 5-6% of variation in patient activation scores associated with demographics
- 6. Activation and health behaviours Hypertension self-care 100 75 50 25 0 Take Rx as recommended Level 1 Level 2 Level 3 Level 4 Know what BP should be Monitor BP weekly Keep BP diary
- 7. Patient activation and behaviours Health behaviours correlated with PAM scores: › Eating a healthy diet and taking regular exercise › Attending screenings, regular check ups and immunisations › Seeking medical care when needed › Preparing questions for a visit to the doctor › Asking if they don’t understand what they are told › Knowing about their condition and treatment › Adherence to treatment and monitoring their condition
- 8. Insights › Many of the behaviours we are asking people to do are only done by those in the highest level of activation › When we focus on the more complex and difficult behaviours – we discourage the least activated › Start with behaviours that are more feasible for patients to take on, increases individual’s opportunity to experience success
- 9. PAM predicts outcomes * * * * ** * * * * * * ** ** 2.0 Odds Ratio
- 10. Patient activation and outcomes Outcomes correlated with PAM scores include: › Clinical outcomes - e.g. body mass index, blood pressure, cholesterol, mental health symptoms › Patient experience - e.g. satisfaction › Cost - $2000 difference between patients who have are high in activation and those who are low in activation over a one year period (after controlling for controlling for demographics and health status). 31% difference in cost.
- 11. PAM in Multiple Sclerosis › Validated in patients with Multiple Sclerosis Stepleman et al. (2010) › PAM scores associated with self-efficacy, depression, quality of life › Individuals with relapse-remitting MS, in current employment and with high levels of education more activated than other subgroups. Goodworth et al. (2014) › Patient activation measure may be helpful in identifying targets for interventions to support self-management including health literacy, depression symptoms
- 12. What patient activation tells us › Many people don’t understand the role they can play in managing their health › Efforts to improve people’s health may be ineffective or overwhelm some patients › People with low activation represent a group with the highest health inequalities. They are: › Least likely to adopt healthy behaviours › Have the worst health outcomes › Have the highest healthcare costs › Least likely to access and benefit from health interventions available › A ‘one size fits all’ approach of health system delivery is often inefficient and sets up a substantial proportion of patients to fail
- 14. Applications of patient activation • Use of tailored coaching approaches • Raising levels of activation Empowering people • Making sure interventions work for everyone • Evaluating effectiveness • Demonstrating long-term outcomes Evaluating interventions • Designing services according to different capabilities Understanding populations
- 15. Personalising individual care What practitioners want patients to do: › Take an active role in making informed decisions e.g. health literacy, shared decision making › Take an active role in managing their health e.g. self-management Current practice: › Led by clinical guidance › Deliver information › Often require patients to make multiple changes in behaviour › Expect patients to be engaged in the process › Beliefs about role and responsibilities of clinicians and patients and about specialist practitioners
- 16. Tailoring support to activation Level 1 Focus on building self-awareness and understanding behaviour patterns Begin to build confidence through small steps “Let’s not try to tackle everything right now. Let’s just focus on one thing” Level 2 Help patients to continue taking small steps Help them build up their basic knowledge “You’re off to a good start. Let’s build on your success by reducing your portion sizes at lunch time…” Level 3 Work with patients to adopt new behaviours and develop condition specific knowledge and skills Support the initiation of “full behaviours” e.g. 30 mins exercise, 3x a week “You’re making great strides. Do you think you’re ready to take your efforts up a notch?” Level 4 Focus on preventing relapse and handing new or challenging situations Problem solving and planning for difficult situations to maintain behaviours “Let’s talk about how you can maintain that, even when life gets more stressful.”
- 17. Is what you are doing effective? Thinking about your clinic or service: › Who does your service or interventions reach? › Does your service just deliver care or does it empower patients to take an active role in their care in the process? › Does your service improve long term health outcomes? › How effective are individual practitioners at supporting individuals to manage their health? Using the patient activation measure as an outcome measure
- 18. Taking a population level approach › Identifying those at risk of greatest inequalities › Least likely to adopt healthy behaviours › Have the worst health outcomes › Have the highest healthcare costs › Least likely to access and benefit from health interventions available › Tailoring existing service delivery to different activation levels › Ensuring service provision to meet the needs of patients at different activation levels
- 19. Stanford Chronic Disease Management Program › Workshops aimed at helping people handle their problems more effectively, engage in appropriate exercise and communicate with providers and family. › Taught classes but highly participative, mutual support, and building confidence through success. › Delivered by 2 trained leaders, at least one whom is a non-health professional living with a chronic condition › 2.5 hour weekly workshops over a 6 week period Increases in patient activation are sustained for up to 18 months
- 20. Co-creating Health programme › Whole system approach to supporting people with long-term conditions › Included people with COPD, diabetes, depression, long-term pain › Self-management support programme for patients › Skills training programme for clinicians › Service improvement programme to put systems and processes in place that support people to manage their own health Improvements in patient activation and quality of life
- 21. Maximising care delivery Maximising the doctors time for low activated patients › Using specially trained medical assistant to meet the patient prior to their appointment to help them formulate questions for the clinician. Meeting again afterwards to discuss the visit and review the patient’s medications. Providing differential treatment options › Improving the detection and treatment of urinary tract infections, patients with high activation are offered a home test kit, while those with lower activation are encouraged to attend more frequent appointments. Maximising treatment delivery › If patients attending a clinic are due for a mammogram, those with high levels of activation are offered an appointment, while those with low activation get the mammogram the same day.
- 22. Thinking about population needs PeaceHealth Patient Centred Medical Home PAM level Disease Burden Low High High Electronic resources Usual team members Focus on prevention Electronic resources and peer support Usual team members Focus on managing illness Low High-skilled team members Focus on prevention High-skilled team members More outreach Focus on developing skills to manage illness
- 23. Taking this forward - England › The Health Foundations’ - Co-creating Health self-management programme › NHS England pilot – NHS Kidney Care, 5 provider/commissioner sites › Self-management programmes for LTC › Supporting clinicians to adopt tailored coaching approaches › Tackling health inequalities › Commissioning to improve & evaluate outcomes in LTC › Evaluation of implementation and outcomes › Dissemination of learning more widely
- 24. De-bunking the myths “It’s about getting people to do what we want” Interventions that aim to get people to take a greater role but do not empower people do not change activation levels. “Self-management and patient activation is only relevant to those who are most capable” Interventions which are effective at improving patient activation demonstrate that individuals with the lowest activation levels improve the most. Patient activation is about ‘Meeting people where they are’
- 25. The King’s Fund paper
Editor's Notes
- Going to talk to you about a concept called ‘patient activation’ and how it can help us to understand what it means to take an active role in managing your health. Patient activation is a behavioural concept that was developed by Professor Judith Hibbard. It arose from the observation – of why… What emerged from working with individuals living with long term illnesses and associated professionals is that People who took an active role and were good at managing their health had the requisite knowledge, skills and confidence to manage their health, while those who were passive did not. These factors were captured in a single concept known as patient activation.
- The elements that form patient activation have been combined into a measure. It comprises 13 items and each item varies in it’s level of difficulty, so that some items most people will find easy to answer yes to, while others only a few will. It is an interval scale which means that it is a extremely effective at distinguishing differences between individuals but also sensitive to measuring change. Important to note that all the items are ‘I’ items, as such this is not a measure of whether the individual has received information, training or understands what to do, but a measure of where an individual sees themselves in relation to managing their health. Could be said that patient activation is a measure of empowerment itself – rather than the outcomes of an empowered person
- Been validated in a wide range of populations including Multiple Sclerosis In each population studied there are patients with a range of activation scores, some at the low end, some at the high end. Distinct from socio-demographics, demographics only accounts for 5-6% of the variation in scores. This means that you will always find people who lack the knowledge, skills and confidence to take an active role, and the even in groups that are identified as traditionally high risk, there will be people who are highly activated and have the capabilities to self-manage.
- Patient activation scores can be broken down into roughly 4 different ‘levels’ of activation and individuals who scores fall within each of these levels share a number of characteristics Level 1: Patients at the lowest level of activation often don’t see that they have a role in managing their health – that’s for the doctor to do. They may feel overwhelmed and had a lot of experience of failure. They tend to be passive. Level 2: Patients at this level may recognise they have a role lack basic health facts or have not connected these facts to understand how this affects their health Level 3: Patients may be making some small changes but can lack the confidence that they are having an effect and the skills to maintain them over time Level 4: Patients have adopted new behaviours but in the face of stress such as going on a long flight or holiday they may struggle to maintain them. So that characterises patients – it’s interesting to see how much of this you think you recognise in the patients you see. Patient activation reflects an individuals self-concept of their role in managing their health, which can often be invisible within a short consultation. 25-40% of all populations have the lower levels of activation
- Patient activation is related to the likelihood of an individual adopting a health behaviour In those with high levels of activation most take medication as prescribed, but as the levels of activation decrease, so do those who succeed at that activity. As the task gets harder, fewer succeed but still more people with high levels of activation are much more likely to adopt the behaviour than those with low.
- Patient activation has been shown to be related to a number of different health behaviours In practice you might ask someone with MS to take a medication, exercise a bit more and modify their diet. Patients with low levels of activation may try to do all, fail and stop doing everything.
- Taken from a study looking at the patient activation scores over a two year period for people with a range of long term conditions After controlling for a number of demographic factors including: age, sex, number of chronic conditions, income They found that the PAM score predicted a range of different health behaviours and outcomes over a 2 year period Insignificant results for A1c, LDL, Diastolic Blood Pressure, and Systolic Blood Pressure not shown
- What is more, patient activation levels can be changed and when they do, so do the outcomes. For those whose PAM scores started high and remained high their costs are $2000 less than patients whose PAM scores started low and remained low. Cost linked to A&E use and inpatient use
- Currently in early stages, although probably part of the long-term conditions in US studies Looking at relationship between patient activation and other health-related measures rather than health behaviours.
- The health system as a whole is not good at this. Needs a real change in culture, service delivery approaches and service provision NATURAL BREAK
- Patient activation is gaining in interest and has been widely applied in the US. I want to highlight three areas in which an understanding of patient activation and the use of the measure can help support individuals to take an active role in managing their health, improve healthcare delivery and outcomes. The first is in the way we provide care on an individual basis The second is in ensuring that interventions that you provide are effective The third is in understanding population level risk and designing systems which incorporate this.
- What are we seeking to achieve? We want patients who take an active role in the process of care, asking questions, checking if they don’t understand something We also want people to take an active role in managing their health, seeking help when necessary, making positive lifestyle choices Currently, we the care that we deliver tends to be primarily informed by a clinical perspective – this condition = this treatment We often give the patient the facts/information without thinking about the level of understanding or the effect this may have on the patient – feeling overwhelmed We often suggest patients have to make multiple changes, stop smoking, exercise more, eat less We tend to expect that by being in the room, patients are engaged in the process There is only so much the doctor can do, whether the patient follows advice – that’s their responsibility. Also about the role of specialist
- I find an analogy my colleagues use helpful for thinking about using patient activation, we already apply a clinical lens, patient activation is about applying a behavioural lens – about the individuals capabilities and concept of themselves as able to manage their condition. We know that delivery of care is most effective when it is tailored to an individuals level of activation One of the approaches which has proved successful is tailored coaching I don’t know how many people have experienced coaching approaches but it’s about supporting the individual to develop their own pathway and skills in problem solving rather than giving information or doing it for them. For low activation – although may benefit from changing multiple behaviours – help them to choose one that is most achievable or important; help to break it down into manageable steps; check how it’s going and work out next step; help to problem solve For high activation – focus on building behaviours and planning for situations that may throw them off. Health professionals and practitioners who are good at this see supporting patients to lead healthy lives / improve their outcomes as a central part of their role. Not necessarily a new intervention – a style and focus of working!
- Using PAM as an outcome measure We know that patient activation is linked to engagement – so who is your service reaching? Angela Coulter’s work on self-management programmes in the UK has found that often it’s only the most activated who engage, so you are not getting those who are most likely to have the worst health outcomes. Do you provide treatment or do you additionally give the patients the skills to take a greater role in managing their health? Many measures of treatment outcome are relatively short term – treatment completion, symptom improvement. Increases in patient activation linked to longer term improvements Which practitioners are good at this? Why? Using this to develop staff
- We know that patients with low activation have the greatest health inequalities – way of understanding where there is need and targeting these groups What can we do to tailor existing services to ensure that patients with low activation benefit and interventions are not over-resourced for those with high activation Finally, are the services that we commission able to meet the needs – increasing focus on commissioning assertive type services for some populations who struggle to benefit from existing services.
- Enhancing self-management Measuring the effectiveness of a self-management programme People with lots of different LTC together – remember this is not about a specific condition or behaviour it is about empowering people to choose and gain the confidence in developing the skills to self-manage. Often peer support has been used to support people in this process.
- Both patient and staff programmes sought to enhance knowledge, skills and confidence around self-management Patient activation used to support staff in this process and as an outcome
- Enhancing care or differentiating treatment in existing services. In the US, patient activation provides an insight into how different people approach their health and people in different settings apply this knowledge to the care they deliver. Beyond tailored coaching – no one ‘right’ or wrong intervention – about taking people’s capabilities into consideration, and can then measure outcomes including PAM
- Example of how patient activation is being used to think about tailor services on a population level. Combining knowledge of the complexity of the condition with the individual’s capabilities Usually one service and all of these patients are in one box; High disease burden + low activation – hands on; focus on developing skills to manage Low disease burden + high activation – support ‘on tap’; focusing on prevention of relapse Ensuring that people get the help and support that is appropriate to their capabilities Effective use of resources
- Additional interest from : Rheumatology Cancer MS – North London – Bernadette Porter Diabetes
- Acknowledge - Hard to convey in a short period of time Debunk some myths I’ve regularly come across Patient activation is not a fix for involvement; nor is it an intervention in its own right It is a tool which enables us to understand why we are each different in our ability to manage our health and enables us to ‘Meet people where they are’ Your role as clinicians and practitioners is crucial in this
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