FAQs for Patient Activation licences

What is the application process for securing Patient Activation licences from NHS England?

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 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 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 has 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 April 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 in the first round 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.

It is anticipated that the next round of the application process will open later this year when more organisations can apply for PAM licences.

If our organisation was unsuccessful in the first round of applications, can I apply again in the next round?

Yes, you can apply in the next round of applications. However, if you were unsuccessful in the first round, it will be helpful for you to work with your partners and think about scaling up your plans to use the licences; how to use PAM to more effectively tailor services to individual’s needs in your programme and developing an outcomes-based commissioning approach.

Additionally, to further develop your proposed use of PAM licences to achieve the wider system change in your local health economy, it will be helpful for you to work with other organisations and understand how they are using the tool (the list of organisations to use the tool is available on our website). This will help to ensure that your future proposal of using PAM will align more with our narrative to achieve the wider system shift and will be able to support people more to develop their knowledge, skills and confidence in managing their conditions.

Will we need to sign an agreement to use the PAM licences?

Yes, organisations will need to sign an Affiliate Agreement and a Memorandum of Understanding (MoU) with NHS England.

Is there a minimum or maximum number of licences that I can apply for?

We would encourage organisations to apply for a higher number of PAM licences for your proposed cohort of patients.

Measuring patient activation is a core enabler for NHS England’s Self-Care 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. Small projects using only a few licences will not be able to demonstrate how their use of the measure will have the desired wider reach and impact across their local health system.

Evidence has shown that trialling the use of PAM with only a few licences does not meet intended outcomes as little progress is made to align the organisation and systems around the importance of activation, such as processes, staff and leadership. These smaller pilots do not create the programmes necessary to leverage the PAM to target resources and tailor support to people with LTCs. The small sample sizes also do not allow reliable conclusions to be drawn from a statistical perspective.

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.

You will have the opportunity to attend regional/thematic learning sets. You will also benefit from the experiences of the current learning set, who have been using PAM over the last two years in their local areas.

However, you will need to plan and implement your interventions that 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 will be given to put these interventions in place.

For any queries, you can email england.patientactivation@nhs.net

Will successful organisations be given training to use PAM?

It is mandatory that successful applicants attend at least one Patient Activation training workshop, provided by NHS England in collaboration with Insignia Health. These are full day sessions supporting sites to understand how patient activation can influence the way in which people are supported to manage their long-term conditions and will provide in-depth training on how to use the PAM tool.

The first of these workshops were held on 14 June 2016 in London, and 16 June 2016 in Leeds. Further training days are scheduled in September 2016.

In addition to the training workshops, Insignia Health will lead a number of (free) webinars to support participants in using the PAM tool. Patient Activation sites are expected to contribute to the design of these webinars to ensure content is tailored to meet their needs. Webinar attendance by participants is encouraged, but not mandatory. These webinars are scheduled for July, August and October 2016.

How is the PAM questionnaire completed? How can we engage with patients to administer it?

Practical questions around the administration of PAM and using it effectively will be covered in good practice ‘How to’ guides that NHS England will publish shortly. These will capture the learning from the use of PAM by the learning set and other resources.

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?

As part of NHS England’s licence agreement with Insignia Health, we are providing organisations with access to paper-based version of the PAM at no cost.

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.

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.

We are interested in using the local PAM CQUIN with our providers – can we do that?

Yes, you can, provided your vision for using PAM is aligned to our patient activation narrative and you are successful in securing the use of PAM licences as part of this process.