Evidence and outcomes resources: Physical health issues
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We have sourced some helpful links for organisations working with people with physical health issues or their families/carers. You may find these useful in planning and carrying out your outcomes data collection, or in understanding the evidence base for your model. The advice includes:
- Existing research and evidence in your sector to help you establish what evidence already exists. This will help you understand the extent to which you need to collect outcomes data yourself, or how rigorous your methodology needs to be.
- Guidance to help you design suitable outcomes or indicators to evaluate your service or programme.
- Existing outcomes frameworks and data collection tools developed by academics or leading charities in the field. The benefit of using an existing framework or measure is that you don’t have to spend time and money developing your own, and you can be more confident in the quality. The downside is that it is not tailored to your organisation, so some outcomes or data collection tools may not be suitable for your context or the people you work with.
Please note that these resources were not identified through an exhaustive review.
Research and evidence
Resource |
Description |
| Tools for accessing data | Data tools to access, review, monitor and extract government data on health and social care for analysis and reporting (NHS Digital).
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| Fingertips | Indicators across health and wellbeing. Allows users to browse indicators at different geographical levels, benchmark against the regional or England average, and export data to use locally (Public Health England).
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Guidance
Resource |
Description |
| My data, my care | Case studies from Richmond Group member charities to show why data is critical for good healthcare and the tangible benefits which can be gained from its use (The Richmond Group of Charities, 2017). The Richmond Group is also working with Public Health England and Mind on Doing the right thing, a project that aims to shape health and care system reform by showcasing the voluntary and community sector’s value.
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Frameworks and data collection tools
Resource |
Description |
| Condition-specific standard sets of health outcomes | Outcomes for specific medical conditions including cancer, cardiovascular, neurological, and musculoskeletal conditions. The outcome sets cover areas such as symptoms, functioning, clinical status, survival, and quality of life. Each set is accompanied by a reference guide including definitions, selected tools, time points for collection, and associated risk factors (International Consortium for Health Outcomes Measurement).
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| Outcome Measures in Rheumatology | Core sets of measures for most of the major rheumatologic conditions prepared and updated by expert working groups through an international, informal network. Since 2002 patients have been actively engaged in the process (OMERACT)
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| Patient Activation Measure (PAM) | A measure of ‘activation’, which predicts a broad range of health-related behaviors and outcomes. Based on evidence that individual self-management improves significantly as activation increases (Insignia Health). Requires a licence.
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| EQ-5D instruments for measuring health-related quality of life | Tool for measuring health-related quality of life. It comprises five dimensions: mobility, self-care, usual activities, pain/discomfort and anxiety/depression. Can be used for a wide range of health conditions and treatments. The scores can be presented as a health profile or converted to a single summary index number. There are versions of the instrument for use with adults and children (EuroQol group).
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| Palliative Care Outcomes Scale | Outcome measures for patients with advanced disease, widely used. Includes guidance on how to administer and score the tool, and how to interpret, report and implement the findings (Palliative Care Outcomes, first developed in 1999).
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| Patient Reported Outcome Measures (PROMs) | Outcome measures that assess the quality of care delivered to NHS patients from the patient’s perspective. Currently covering four clinical procedures: hip replacements, knee replacements, groin hernia, and varicose veins (NHS Digital).
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These webpages have been adapted from the Inspiring Impact programme, which ran from 2011 until early 2022 and supported voluntary organisations to improve their impact practice. More information about the Inspiring Impact programme.
