Patient Reported Outcome Measures: A toolkit to measure outcomes that matter

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This page connects stakeholders, including healthcare professionals and managers, digital companies, and patients with the Scottish Cancer Patient Reported Outcome Measures (PROMs) toolkit, a guide developed by the Scottish Cancer PROMs Advisory Group (SC PROMSs AG). The SC PROMs AG was co-founded in 2021 through a Scottish Government-funded collaboration between NHS Scotland Health Boards, the University of Strathclyde and The Cancer Medicines Outcomes Programme-Public Health Scotland: (CMOP-PHS)

PROMs directly support achieving outcomes that matter, a key pillar of Value Based Health and Care. By gathering information about the impact of care on patients' quality of life it can inform next steps and drive improvements in their care and healthcare services. Data is a vital component of Value Based Health and Care and Realistic Medicine as it provides measures with which we can benchmark success.

What is the PROMs Toolkit?

The SC PROMs toolkit has been created for all stakeholders including healthcare professionals, digital companies and healthcare managers as they consider how to develop and disseminate Patient Reported Outcome Measures (PROMs). Although this toolkit was initially developed  for cancer care, it is widely applicable across health and social care. You can access and download the toolkit in pdf form by selecting the toolkit image below:

Core principles of PROMs

The toolkit provides ten key principles to guide your development and implementation of PROMs. These principles are evidence-based and have been approved by the Scottish Government's Scottish Cancer Strategic Board and are in fulfilment of Action 126 of the Scottish Government’s Cancer Action Plan. The Core Principles can act as a roadmap and checklist to ensure that you have incorporated all of the key elements of planning PROMs before their implementation., They also allow for flexibility in application to reflect different contexts.

The Core Principles can be found in the toolkit and are further elaborated on there. 

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Set Out a Plan for the Evaluation of PROMs

It’s important to track how PROMs projects are doing over time, so that they can be improved.

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Ensure Planning and Resource Allocation for Adoption & Implementation

Teams need to ensure they have the finances, staffing and equipment needed to collect PROMs as part of routine care.

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Develop a Governance Framework

Any existing laws, policies or regulations should be followed, and there needs to be a clear outline of how PROMs data is collected, stored and protected.

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Have Active Stakeholder Engagement & Cooperation


The people who will be impacted by the collection and use of PROMs need to be consulted on how this should happen.

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Have Clearly Defined Outcome Measures


People designing/adopting PROMs need to have a clear idea of what exactly they want the PROMs to measure (e.g. severity side effects).

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Use Valid and Consistent PROMs tool(s) / Items


There are lots of different tools (like questionnaires) out there for collecting PROMs. Tools or questions within tools that are of a high quality should be used.

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Take an Integrated Approach to PROMs


Collecting PROMs should work in harmony with any digital systems used, with the ways that clinical teams work, and within the care pathway that patients may be on.

 

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PROMs should be completed by patients / with carers
 

Self-explanatory. The patient voice is most important in PROMs.

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Analyse, Interpret, Report, & Disseminate PROMs Data

It’s not enough to collect PROMs data from patients. Clinical teams need to look at the information patients provide as part of patient care, and do something with that information. 

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Consider Accessibility / Inclusivity

Patients who want to complete PROMs should not be limited by language or any impairment, for example. Also, any patients who choose not to complete PROMs should not be disadvantaged in any way. 

We value your feedback

Your feedback on this toolkit would be greatly appreciated. Please complete the feedback form and help improve future versions of the SC PROMs Toolkit.

Get in touch:

To find out more about this toolkit, CMOP-PHS or if you need some advice or support from the SC PROMs Advisory Group, please contact PHS.CMOP@phs.scot