Cancer strategy: consultation analysis

Question 13

Data (knowledge, information and statistics) are important to help manage cancer care as well as for measuring how well we are doing. There continue to be new innovations and technology that can help with diagnosis and more precise treatment. And research is important to stay up-to-date and know what works best.

We want to make the best use of Data, technology and measurement, and are considering:

Data for example:

• Outcomes e.g. recurrence, benchmarking
• Scottish Cancer Registry and Intelligence Service (SCRIS)
• Quality Performance Indicators (QPIs)
• Cancer Waiting Times (CWTs)
• Cancer Medicines Outcome Programme (CMOP)
• Patient Reported Outcome Measures (PROM)
• Multi-disciplinary teams (MDTs)
• Research, technology and innovation (including regulation/quality/safety)
• Clinical trials
• Precision medicine
• Genetics/genomics/molecular pathology (screening, diagnostics, treatment)
• Robotics
• e-health, for example, Near Me and Connect Me

Do you agree with these areas of focus?

There was a high level of support for the proposed areas of focus among respondents: 95% of respondents agreed with the areas of focus, while 5% did not agree. Respondents were also asked to provide any comments on their response, and the key themes raised in responses are covered below. There were three open-format questions on the areas of focus for data, technology and measurement:

• 161 responses to the first question ("In your experience, what aims or actions would you like to see under any of these areas? Please focus your response on data, technology and measurement."): 82 from individuals and 79 from organisations.
• 119 responses to the second question ("Is there any technology you would like to see introduced to improve access to cancer care? Please consider access to screening, diagnostics, results, tracking of your pathway."): 55 from individuals and 64 from organisations.
• 76 responses to the third question ("Please explain your answer and provide any additional suggestions."): 36 from individuals and 40 from organisations.

Data collection and use

The main theme identified regarded the collection of data and how these should be utilised. Respondents stressed the importance of data collection, and many referred to PROMs, QPIs, PREMs and the CMOP as key measures of patient experience and cancer outcomes. Respondents felt that there needed be standardisation of data collection with training for staff to ensure quality. Some responses also suggested that focus needs to be placed on cancers for which there are currently have less data available.

"Good data is vital in measuring and assessing quality of care. The regular collection and use of PROMs (Patient Reported Outcome Measures) data in Scotland would be an important step forward in monitoring and improving the quality of cancer care. […]" (Organisation response)

Respondents also stated that data should be readily accessible and shared with patients so that they can be involved in informed decision-making throughout their cancer journey.

"We support access by health professionals to all data that help them manage the diagnosis, treatment and care of patients. We would like all patients to be able to access data to help them understand their condition, if they wish to do so and to help them make informed decisions about future treatments and other options together with health professionals. […]" (Organisation response)

Patient experience

Another common theme within the responses related to patient experience. Many respondents felt that improved digital provisions and services for patients would be beneficial. A frequent suggestion was for an online hub where treatment plans could be viewed, patients could communicate with clinicians and have their test results posted to reduce waiting times. Respondents acknowledged the need to offer digital skills support to the workforce if implementing this suggestion.

"In my experience offering digital support was very beneficial in building knowledge and confidence using devices." (Individual response)

Respondents also stressed the importance of having non-digital services available as there were concerns that patients already digitally excluded would be left behind, with the examples of older people and those living in remote areas cited frequently. They also felt that face-to-face interactions might be more appropriate for certain aspects of the cancer journey.

"At the point where people need cancer services they also need face to face compassion, not technology." (Individual response)

Cancer detection technologies

The next most frequent theme was the need for improvements in cancer detection technologies. Respondents commonly spoke about screening as needing to be more accurate, timelier, and more accessible, particularly to less engaged groups.

"[…] Screening uptake measured by protected characteristics groups would be helpful to direct programmes of work. Average percentages reported back per practice do not allow us to target the population groups who do not take up screening invites (and ensuring health literacy plays a part so that people are making an informed choice if they want to take part or not)." (Organisation response)

Respondents also frequently felt that diagnostic radiology and genetic/genomic testing were valuable tools in the detection of cancer, and they therefore suggested that more funding be directed towards these technologies in order to develop them further.

"A national push on blood screening to detect and diagnose cancers at an earlier stage and incorporate genomic sequencing." (Individual response)

Coordination of computer systems

Another theme identified was the need for improved coordination and integration between computer systems. Respondents frequently called for a singular, interoperable system to streamline communication between services and from services to patients.

Respondents suggested that better coordination of systems would mean cancer patients would not have to chase up information and results from multiple services themselves and would allow for pooling of data for rarer or lesser-known cancers.

"Far better joined up systems within the NHS and also with private care providers and possibly the third sector with consent. The systems within the NHS do not 'talk' to one another and clinical teams are required to send an email/ letter to GPs in order to keep the informed. The onus is on patients to advocate for themselves and ensure lines of communication are clear. That is truly exhausting!" (Individual response)

Clinical trials and future research

Lastly, the theme of clinical trials and future research was identified. Respondents expressed support for increasing the number and accessibility of clinical trials. They felt that more opportunities should be available for cancer patients to be involved in clinical trials and that this would require increased promotion of them. It was also commonly expressed that more diversity amongst participants would be welcomed.

"I think that research and innovation is crucial. Most of the people I know with positive cancer experiences were involved in clinical research." (Individual response)

"We would like to see more support for cancer research, and people with cancer of all ages and backgrounds are given the opportunity to participate in clinical trials. […]" (Organisation response)

Respondents suggested that any research should be compared to other countries and stated that real-world evidence would also need to be collected. Many respondents also called for the focus of future research to be on less survivable cancers.

"Should be connected with European studies and take a wider approach for comparability of data and testing." (Individual response)