Patient activation: New insights into the role of patients in self-management

Patient activationNew insights into the role of patients in self-management

Helen Gilburt, Fellow, Health Policy

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

The Patient Activation Measure

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

Levels of activation

Activation and health behaviours

Hypertension self-care

0

25

50

75

100

Take Rx asrecommended

Know what BPshould be

Monitor BPweekly

Keep BP diary

Level 1 Level 2 Level 3 Level 4

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

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

PAM predicts outcomes

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**

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Odds

Ratio

2.0

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.

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

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

Thoughts & questions

Applications of patient activation

• Use of tailored coaching approaches

• Raising levels of activationEmpowering

people

• Making sure interventions work for everyone

• Evaluating effectiveness

• Demonstrating long-term outcomes

Evaluating interventions

• Designing services according to different capabilitiesUnderstanding

populations

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

Tailoring support to activation

Level 1 Focus on building self-awareness and understanding behaviour patternsBegin 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 stepsHelp 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 skillsSupport 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 situationsProblem solving and planning for difficult situations to maintain behaviours

“Let’s talk about how you can maintain that, even when life gets more stressful.”

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

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

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

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

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.

Thinking about population needs

PeaceHealth Patient Centred Medical Home

PAM level Disease Burden

Low High

High Electronic resourcesUsual team members

Focus on prevention

Electronic resources and peer supportUsual team members

Focus on managing illness

Low High-skilled team members

Focus on prevention

High-skilled team membersMore outreach

Focus on developing skills to manage illness

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

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’

The King’s Fund paper