What suggestions do you have for what we should measure to make sure we are achieving what we want to in improving cancer care and outcomes?
Please focus your response on cancer care and outcomes.
There were 164 responses to this question (89 were from individuals and 75 from organisations).
Specific indicators and methods
The most common theme included suggestions on specific indicators and methods for data collection and modelling. Most respondents within this theme felt that QoL, PROMs, and PREMs were the most useful measures of what is meaningful to patients. QPIs were frequently discussed as being useful but require more routine collection to reveal trends in inequalities. It was said that QPIs alone do not collect the qualitative data needed to inform patient-centred care. In addition, the CMOP was referred to as being beneficial in informing practice and identifying subsequent impacts.
"We believe that measures such as the Quality Performance Indicators (QPIs) for kidney cancer are extremely valuable. We would like to see more frequent interim progress reports made available at Cancer Regional level regarding the QPIs and combined with action plans to deliver them." (Organisation response)
"Increasing attention to patient's quality of life and satisfaction with services" (Organisation response)
Patient-specific outcomes and communication
Many respondents suggested that outcomes were based on the experience of patients. According to responses under this theme, the outcomes need to be tailored to each patient's needs and their particular diagnosis. Some respondents also mentioned the use of HNAs or family history.
"Talk to patients, follow up. Don't just discharge them." (Individual response)
"As previously stated I believe that a support nurse for each patient will help the patient. It's important for patients to have someone they can rely on to help out rather than a patient having to try and solve a problem." (Individual response)
While patients' feedback was seen as important by respondents, there was some criticism regarding the current engagement approach. A few responses suggested that surveys may be too cumbersome to be filled by individuals. They proposed that a more joined-up data collection and sharing approach between cancer services would mean patients are not asked the same question more than once. Respondents also suggested that reaching out to carers and families where patients were not able to fill out surveys themselves would reduce the burden on patients.
A large number of responses discussed outcomes as related to time. The waiting times between different procedures (e.g. between diagnosis and treatment or between first referral and diagnosis) were highly stressed. Equally stressed was the importance of an early diagnosis.
"Should measure the time to diagnosis, amount of visits and days from first complaint of symptoms to diagnosis, amount of time it takes to see GP to get taken seriously" (Individual response)
Furthermore, under this theme, respondents suggested periodic checks and frequent updates on indicators.
"Patient info - years lived since primary diagnosis. Years before death of secondary diagnosis." (Individual response)
Aggregate statistics on treatment efficiency
In the next most common theme responses recommended the use of aggregate statistics as indicators of the efficiency of cancer treatments. These included reporting death rates, indicators on survival, incidents and treatment rates. Furthermore, respondents identified recurrence and spread rates also as useful indicators.
"Every patient is included and the quality of all cancers are measured (time, survival and experience). Recurrence and spread is also measured. Ideally carers are included too." (Individual response)
"Measure: less people dying from cancer" (Individual response)
Some respondents further suggested to focus on areas with high health inequalities, while others suggested to compare statistics with international evidence.
Management of relevant bodies and the workforce
Equally prevalent were responses focusing on the management of public bodies and the workforce. Among others, respondents raised the importance of hospital monitoring, training and support of health and care workforce, changes in policies, investment and financial support for specific departments, registration of patients, strategies to achieve cost-efficiency, and investment in research. Furthermore, a few responses underlined the need for accountability of these bodies.
"When the hospitals have you in to formally apologise for things having gone wrong and promise to make changes it would be good for a formal body to keep an eye on such changes to ensure they actually happen as all too often there are lots of 'we got it wrong this time and changes have been made' but nothing actually changes. They should be followed up." (Individual response)
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