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Book part
Publication date: 15 November 2023

Thomas R. Martin

This chapter provides an overview of the role of technology and policy in shaping care plans for patients. Historically, healthcare has lagged behind other industry sectors in…

Abstract

This chapter provides an overview of the role of technology and policy in shaping care plans for patients. Historically, healthcare has lagged behind other industry sectors in adopting and deploying useful technologies, and policy surrounding use is an important component of establishing a long-term strategy. This chapter evaluates the current state of technology in the clinical setting and extends the widely adopted policy-based approaches into the palliative care context.

Details

Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine
Type: Book
ISBN: 978-1-80262-310-9

Keywords

Book part
Publication date: 15 November 2023

Daniel J. Miori

This chapter introduces Learning Health Systems (LHS) and the impact of data science on such systems. It also examines the necessary properties of data used in LHS and identifies…

Abstract

This chapter introduces Learning Health Systems (LHS) and the impact of data science on such systems. It also examines the necessary properties of data used in LHS and identifies patients who may benefit from a transition to palliative care. Finally, it examines the way LHS can be used to identify racial and social disparities in access to palliative care.

Details

Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine
Type: Book
ISBN: 978-1-80262-310-9

Keywords

Content available
Book part
Publication date: 15 November 2023

Abstract

Details

Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine
Type: Book
ISBN: 978-1-80262-310-9

Content available
Book part
Publication date: 15 November 2023

Abstract

Details

Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine
Type: Book
ISBN: 978-1-80262-310-9

Book part
Publication date: 15 November 2023

Virginia M. Miori

Characteristics that impact the levels of palliative care are introduced. Patients with the potential to be classified as palliative may be overlooked or simply so not seek…

Abstract

Characteristics that impact the levels of palliative care are introduced. Patients with the potential to be classified as palliative may be overlooked or simply so not seek medical attention. The population is much higher than those being treated on an annual basis. Data from the American Community Survey (ACS) and the Behavioral Risk Factor Surveillance System (BRFSS) are applied to the characteristics of palliative care and used to estimate the size of the palliative population in the United States (US).

Details

Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine
Type: Book
ISBN: 978-1-80262-310-9

Keywords

Book part
Publication date: 15 November 2023

Virginia M. Miori

Synthetic patient data produced by Synthea was described in Chapter 6. That data is used to create a baseline for all patients, palliative patients, and deceased palliative…

Abstract

Synthetic patient data produced by Synthea was described in Chapter 6. That data is used to create a baseline for all patients, palliative patients, and deceased palliative patients. Distributions of comorbidities across the patient groups are examined and demographic characteristics. The factors used in palliative care groupings are presented with the synthesized data fields used. The size of the palliative population is again estimated to establish validity.

Details

Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine
Type: Book
ISBN: 978-1-80262-310-9

Keywords

Book part
Publication date: 15 November 2023

Brian W. Segulin

This chapter discusses the design of the LHS and the steps taken to ensure data privacy and security. Usage of the application programming interface (API) is discussed, paying…

Abstract

This chapter discusses the design of the LHS and the steps taken to ensure data privacy and security. Usage of the application programming interface (API) is discussed, paying attention to how an Electronic Health Record (EHR) provider would use the API. Finally, the clinician’s interaction with the system is discussed.

Details

Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine
Type: Book
ISBN: 978-1-80262-310-9

Keywords

Book part
Publication date: 15 November 2023

Virginia M. Miori

Data mapping from synthesized data to palliative care characteristics was the final step before the final analysis of survival. Background and foundation for Kaplan-Meier curves…

Abstract

Data mapping from synthesized data to palliative care characteristics was the final step before the final analysis of survival. Background and foundation for Kaplan-Meier curves are provided before generating curves for the three Palliative Care Groups. Interpretations of the Kaplan-Meier curves are presented along with interpretation of the associated Hazard Curves. Three statistical hypothesis tests, completed on a pairwise basis, are used to verify that the survival curves differ by group. Patients mapped to specific groups may be further supported through advice, counseling, and other services to assist them in moving to a more advantageous care group.

Details

Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine
Type: Book
ISBN: 978-1-80262-310-9

Keywords

Article
Publication date: 13 October 2023

Peter Scourfield

This viewpoint paper focuses on the important role played by hospices in the UK in providing specialised end-of-life care for older people with complex needs – particularly for…

Abstract

Purpose

This viewpoint paper focuses on the important role played by hospices in the UK in providing specialised end-of-life care for older people with complex needs – particularly for the growing number who choose to die at home. With demand for such care growing, the paper highlights the funding issues facing the independent hospice sector and the implications for hospices of receiving more state funding. The purpose of this paper is to highlight the challenges that hospices in the UK face in providing home-based palliative and end of life care for older people.

Design/methodology/approach

This a viewpoint paper informed by recent reports and research findings, as well as the author’s own work within the hospice sector.

Findings

The demand for specialised community-based and home-based palliative and end-of-life care is growing. The Covid-19 pandemic prompted wider discussion about what constitutes both “a good death” and good end-of-life care. This confirmed that most older people would prefer to end their lives free from pain, in familiar surroundings and not in hospital.

Practical implications

The specialised end-of-life care provided by hospices is rated highly by the regulator and the communities which they serve. In recent years, more attention has been given to providing “hospice at home” services, but coverage is limited largely due to lack of funding, the bulk of which comes from charitable fundraising. To provide a more equitable service, the fragility of the hospice funding model needs to be addressed.

Social implications

If the state expands its funding of hospice care, it is important that charitable fundraising also continues to take place and is encouraged. This will help ensure that the good links between hospices and local stakeholders are maintained.

Originality/value

The funding of the hospice sector in the UK has been the subject of several reports both by governmental and non-governmental bodies, several in the last year. However, it is an issue of growing importance and the whole subject needs a fuller airing in academic circles.

Details

Working with Older People, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 1366-3666

Keywords

Open Access
Article
Publication date: 1 January 2024

Caroline Shulman, Rafi Rogans-Watson, Natasha Palipane, Dan Lewer, Michelle Yeung and Briony F. Hudson

This study aims to co-develop a Frailty, Health and Care Needs Assessment (FHCNA) questionnaire for people experiencing homelessness and explore the feasibility of its use by…

Abstract

Purpose

This study aims to co-develop a Frailty, Health and Care Needs Assessment (FHCNA) questionnaire for people experiencing homelessness and explore the feasibility of its use by non-clinical staff in homeless hostels.

Design/methodology/approach

The FHCNA, aimed at identifying frailty and other health and care priorities for people experiencing homelessness, was co-designed in workshops (online and in person) with homelessness and inclusion health staff. Its feasibility was tested by staff and their clients in two hostels, with pre- and post-study focus groups held with hostel staff to gain input and feedback.

Findings

The FHCNA was co-developed and then used to collect 74 pairs of resident and key worker inputted data (62% of eligible hostel residents). The mean age of clients was 48 years (range 22–82 years). High levels of unmet need were identified. Over half (53%) were identified as frail. Common concerns included difficulty walking (46%), frequent falls (43%), chronic pain (36%), mental health issues (57%) and dental concerns (50%). In total, 59% of clients reported difficulty in performing at least one basic activity of daily living, while only 14% had undergone a Care Act Assessment. Hostel staff found using the FHCNA to be feasible, acceptable and potentially useful in facilitating explorations of met and unmet health and social care needs of hostel clients. By identifying unmet needs, the FHCNA has the potential to support staff to advocate for access to health and social care support.

Originality/value

To the best of the authors’ knowledge, this is the first study to co-develop and feasibility test a questionnaire for use by non-clinically trained staff to identify frailty and other health and care needs of people experiencing homelessness in a hostel setting.

Details

Housing, Care and Support, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 1460-8790

Keywords

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