FAQs for Patient Activation licences

About Patient Activation in NHS England’s Self-care programme


How is Patient Activation being used within the Self-care programme?

The NHS Five Year Forward View set out a central ambition for the NHS to become better at helping people to manage their own health: ‘staying healthy, making informed choices of treatment, managing conditions and avoiding complications’. To meet this commitment, NHS England has established a ‘Self-Care Support programme’ to scale-up support for people living with long-term conditions (LTCs) to manage their own health and wellbeing, empower them to make decisions about their health and care whilst delivering financial benefit to the wider healthcare system as part of the £22bn efficiency challenge.

Patient activation is a measure of patients’ knowledge, skills and confidence to manage their own health and is a core enabler for the Self-Care Support programme. Health and care systems that know the activation level of their population can begin to tailor their services in order to support people on a ‘journey of activation’, thus helping them lead better lives at a lower cost to the system.

NHS England agreed a five-year licence to use the PAM tool with up to 1.8 million people through key NHS change programmes, including the new care model vanguards and integrated personal commissioning demonstrator sites. These programmes will have a major impact on how national policy develops, and so have significant implications for enabling person-centred care for people living with long-term conditions. Locally, it is expected that measuring and supporting improvements in patient activation will lead to patients having better outcomes, improved patient experience, increased engagement in healthier behaviour (such as those linked to smoking and obesity), and fewer episodes of unplanned and emergency care.

In May 2016, we invited applications for PAM licences from organisations across the NHS. Applications were assessed for their alignment with our narrative to achieve the wider system shift in their local health economy and ability to support people more to develop their knowledge, skills and confidence in managing their conditions. The list of organisations that were successful in securing licences is available on our website. These include key NHS change programmes such as New Care Model Vanguards, Integrated Personal Commissioning sites and test bed sites. Measuring Patient Activation will support these organisations to become a key partner in NHS England’s Self-Care Support programme, which will begin to deliver further support later in the year.

Do these organisations need to sign an agreement to use the PAM licences?

Yes, organisations have signed an Affiliate Agreement and a Memorandum of Understanding (MoU) with NHS England.

Is NHS England providing support to successful sites?

NHS England is providing some delivery support alongside PAM licences to the successful organisations/local health economies.

The organisations have the opportunity to attend regional/thematic Learning Sets. They are also benefitting from the experiences of the current Learning Set, who have been using PAM over the last two years in their local areas.

However, these organisations will plan and implement their own interventions in order to tailor services to empower people to manage their own health. These include training for health care professionals to develop their skills to support patient activation. No direct programme or project financial support is being given to put these interventions in place.

Is there any training available for using PAM licences?

Training workshops and webinars were organised for successful sites in the summer of 2016 in collaboration with Insignia Health and NHS Sustainability and Improvement team. Further webinars are being organised for sites to meet their training needs.

NHS England will also publish a good practice guide that will cover practical questions around the administration of PAM and how to use it effectively. The good practice guide will capture the Learning Set’s experience of using PAM and recommendations from accepted best practice, e.g. Institute for Healthcare Improvement (IHI), recent guidance from the NHS National Institute for Healthcare Research (NIHR), while others are driven by policy, e.g. co-production, and have been adapted for the context of implementing PAM.

How long are the PAM licences valid?

The licences are valid up to April 2021 in the current agreement.

A PAM licence is constituted as ‘used’ only when it is completed with or by a patient for the first time. Upon the return of a completed questionnaire to the organisation coordinating the administration, the licence’s expiry process will commence.

How many PAM licences do I need to assess the activation of the same person over several years?

You only need one PAM licence per person – it can be used any number of times with the same person up to the end of the licence agreement.

How can we record patients’ PAM data digitally within our local systems?

Insignia Health will send you an interactive spreadsheet, personalised to your organisation, which contains the PAM questionnaire, and will automatically calculate patients’ levels and scores. The spreadsheet can be used to see changes in a patient’s scores and levels over a period of time. This spreadsheet is part of our licence agreement and is separate from using system PAM.

Insignia Health is also in conversation with some system providers to embed the questionnaire and patients’ PAM scores digitally into local health digital systems.

Are there other derivatives of PAM available for people with different needs?

Yes, PAM tools available to use as part of the licence agreement include the Parent/Carer PAM and validated language translations of PAM derivatives (as required). Use of the PAM tool with a patient and their carer(s)/parents only counts as one licence.

Please email england.patientactivation@nhs.net if you need to access the measure in languages other than British English.

Is the Clinician Support for Patient Activation (CSPAM) tool available to use with clinicians as part of the licence agreement?

At the end of 2014, NHS England used a modified version of the CSPAM tool and surveyed over 1750 clinicians, including doctors, nurses and allied health professionals, to explore their attitudes and beliefs, their self-reported behaviours and practices to support people in taking a more active role in managing their health and care. The findings from the survey are available on our website and it also provides an insight into clinicians’ perceived barriers and their support needs.

The CSPAM tool is not part of this licence agreement. If you wish to use it as a reflective tool with your clinicians, you will need to contact Insignia Health directly.

Can we use the digital or online version of the PAM?

NHS England’s licence agreement with Insignia Health is for use of the paper-based version of PAM. However, should you choose to utilise System PAM (the online Survey and Scoring System developed by Insignia Health), then you will be responsible for the costs incurred. The decision of whether or not to purchase and/or use System PAM is at your discretion and NHS England makes no recommendation and gives no advice in relation to the same.

If a site uses System PAM, is there an issue with sending patient non-identifiable data to Insignia Health’s server hosted in Dublin in terms of information governance? Who is responsible for any risk assessment/due diligence?

You will need to ensure that locally, you complete due diligence and local risk assessment to ensure you are compliant with arrangements to send patient non-identifiable, non-clinical data via the server in Dublin.

If a site wants to embed the PAM spreadsheet into its local IT system, who is responsible for complying with information governance?

Yes, you are compliant with the licence agreement if you want to embed the spreadsheet within your IT system. A site would need to follow the terms of the affiliate agreement, their usual IG protocol and complete due diligence to ensure this complies with local governance rules.

Is the Insignia Health tool ‘Coaching for Activation’ available for use as part of the NHS licence agreement?

No, it is not part of the licence agreement. If you wish to use it, you will need to contact Insignia Health directly.

Are there any cohorts for whom PAM is not suitable to use?

Our experience from the Learning Set indicates that PAM may not be suitable for people with conditions such as severe learning disability, severe mental health problems or severe dementia.

The reading age for PAM is 11-12 years. For people with a lower reading age, the Carer and Parent version of PAM is available to use.

Do we need to complete an Equality Impact Assessment (EIA) for using the PAM?

Equality Impact Assessments (EIAs) are no longer a statutory requirement in England. However, they continue to be used by public sector organisations as a way of demonstrating compliance with public service equality duty.

NHS England will not require an organisation using PAM to complete an EIA. It is the decision and individual responsibility of each organisation using the PAM to undertake an EIA in line with their local patient activation plans and broader context of how they will use PAM, which will be unique for each locality.

Will we need to report on our use of licences to NHS England?

Yes, you will need to report on the number of licences used twice a year. We will ask for optional information on the interventions your organisation(s) are using to help develop people’s knowledge, skills and confidence, and improved outcomes noted on an annual/biannual basis.

Will there be further opportunities to apply for licences from NHS England?

The majority of the 1.8m PAM licences secured by NHS England were allocated in June 2016.  NHS England is currently developing its strategy for further use of patient activation licences and how it can demonstrate and support sustainable change in the NHS.  More information will be available on the Patient Activation webpages in the spring of 2017.