Personalised Cancer Care and Support: Identifying What Good Looks Like

The overarching aim is to study the coproduction of personalised care in a digital age by seeking to improve the experience of care and personalised care and support planning for people who live with and beyond colorectal cancer. This study will assess digital health contributions to personalised care and explore how to improve the quality of collaborative digital care planning in cancer services. The electronic holistic needs assessment (eHNA) developed by Macmillan Cancer Support (macmillan.org.uk/healthcare-professionals/innovation-in-cancer-care/holistic-needs-assessment/sign-up-to-ehna) will be used as a case study to help advance this aspect of healthcare improvement studies. The primary objective is to gain a better understanding of how personalised care and support planning in the form of the eHNA and consultation works (or not) from the perspectives of people who are living with and beyond colorectal cancer, and clinicians. The secondary objectives are to: i. identify what good practice looks like for digital personalised care and support planning in a specific tumour group (colorectal) and at a point in the cancer pathway (within 31 days of diagnosis) ii. explore if the ARC framework can be used to inform personalised cancer care and support planning The research will review current practice and focus on identifying what good looks like for digital cancer care planning. It will go on to explore how what we know about LWBC can be used to inform the co-design of digital care planning that better supports personalised long-term cancer care. From the outset, this early work will help to inform future issues around generalisability and scaling-up.

Sex

All

Minimum age

18 Years

Inclusion Criteria:

Patients

1. Patients (who are living with and beyond colorectal cancer) who have agreed to complete the eHNA intervention within 31 days of diagnosis OR patients who received the ARC clinic HNA intervention.
2. Over 18 years of age
3. Speak a conversational level of English Patients will be sampled purposively to ensure a range of experiences. Patients will be sampled on ethnicity, gender, age, time since diagnosis, socio-economic status, and digital maturity, so that findings can also be used to explore and address cancer inequalities.

Paired clinicians

1. Clinicians (e.g., CNS, AHP, cancer support worker) who work in cancer services and provide the eHNA/ARC intervention to (the recruited) patients who are living with colorectal cancer.
2. Over the age of 18
3. Speak a conversational level of English.

Team members

1. Clinicians (e.g., CNS, AHP, cancer support worker) who work in the colorectal cancer team or who work in close liaison with the colorectal cancer team and are responsible for providing the eHNA and care planning consultation.
2. Over the age of 18
3. Speak a conversational level of English.

Exclusion Criteria:

Patients

1. Patients (who are living with and beyond cancer) who are receiving treatment but who have not agreed to complete an eHNA /patients who did not attend the ARC clinic.
2. Under 18 years of age
3. Do not speak a conversational level of English
4. Patients who lack capacity to consent

Patients that are approached to take part in the study but who do not want to participate will automatically be excluded from the project. Insufficient ability to understand/speak English is an exclusion criterion for this study because the research uses audio recordings of verbal conversation and relies on understanding of written study materials in order to ensure informed consent. Participants with a low level of literacy (but with adequate conversational level of English) can be supported by having the researcher read out the participant information sheet and consent form, and to check for understanding.

Paired Clinicians 1. Clinicians who do not provide the eHNA intervention /ARC intervention to patients who are living with and beyond cancer.

Team members

1\. Clinicians (e.g., CNS, AHP, cancer support worker) who do not work in the colorectal cancer team or in close liaison with the colorectal cancer team.

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