Coproducing Personalised Care in a Digital Age: Using the Adversity, Restoration and Compatibility (ARC) Framework to Inform the Co-design of a Digital Care Planning Tool for People With Colorectal Cancer.
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 76
- 试验地点
- 1
- 主要终点
- Patient experience
研究概览
简要总结
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.
详细描述
The study will use two forms of data collection: 1) Video-Reflexive Ethnography (VRE) and 2) individual interviews with patient/clinician dyads from the ARC clinic.
- Video-reflexive ethnography Video-reflexive ethnography (VRE) is a collaborative participatory methodology used by researchers and participants, such as patients and clinicians, to understand, reflect, and improve patient experience and clinicians' work practices. Participants and researchers work together to engage with and co-construct the research, that involves three sequential phases: i) field observations of practice, ii) video recording of in-situ practice, and iii) discussing edited footage with participants in video-reflexive sessions. The film is a vital component of the process, and the critical appraisal gives participant involvement in identifying/determining the focus based on the appraisal of the real time or in-situ practice.
i) Field observations of practice Observations of practice will be undertaken at the outset in order to capture everyday patient and staff practice and to map existing eHNA/personalised care and support planning processes and interactions (i.e., delivery and content).
ii) Video recording of in-situ practice The research will focus on observing/filming the two components of the eHNA process by following (the same) patient-staff dyads (n=up to 15 in total across all sites) from eHNA tool to care plan. The sample size is appropriate, in terms being able to answer the research question and the methodological orientation of VRE and EBCD and the current debates on saturation.
Component 1: Observing (in-person or virtual) patients as they interact with the eHNA
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Other
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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.
- •Over 18 years of age
- •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
- •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.
- •Over the age of 18
- •Speak a conversational level of English.
- •Team members
- •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.
- •Over the age of 18
- •Speak a conversational level of English.
排除标准
- •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.
- •Under 18 years of age
- •Do not speak a conversational level of English
- •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
- •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.
研究组 & 干预措施
People living with colorectal cancer
Patients (who are living with colorectal cancer) who have agreed to complete the eHNA intervention (within 31 days of diagnosis) and care planning consultation and clinicians who work in cancer services and provide the eHNA intervention to patients who are living with colorectal cancer
干预措施: electronic Holistic Needs Assessment (eHNA) (Other)
People living with treatable-but-not-curable cancer
Patients who have received the ARC Holistic Needs Assessment (HNA) intervention from the ARC clinic and clinicians responsible for developing/delivering the ARC HNA intervention.
干预措施: electronic Holistic Needs Assessment (eHNA) (Other)
结局指标
主要结局
Patient experience
时间窗: Through study completion up to 12 months
Improved experience of care as measured through video-reflexive ethnography processes
次要结局
未报告次要终点