Methods for evaluating service delivery models for end of life care (EoLC): development of best practice guidance
Lead Research Organisation:
King's College London
Department Name: Palliative Care and Policy
Abstract
People are living longer but it is inevitable that we will all still die. One result of living longer, is that we are more likely to have symptoms, physical disabilities and illnesses later in life. These problems are likely to need treatment and support ? sometimes for several weeks and sometimes a year or more. The problems often get worse as the very end of life approaches. The government?s End of Life Care Strategy, published in July 2008, sets out a programme to improve care at this time. But its biggest drawback is the lack of knowledge about what services work best and at what cost. The problem is that conducting research into how services work for people at the end of life is difficult and has not been sufficiently developed. This project addresses this gap by producing guidance on the best practices in research into end of life care especially of services. The research will take place over 2 years and brings together experts from 4 world-class universities. They will find, assess and bring together research experiences and will consult with policy makers, research ethics committees, research funders, health care professionals and patients, relatives and carers. For areas of particular difficulty they will hold ?think tank? workshops bringing the top brains to help to find the best solutions. The project will produce guidance on the best ways to undertake research into services for people at the end of life and case examples so that in the future we can have the best in care.
Technical Summary
Background: Research into End of Life Care (EoLC) services is patchy and faces complex difficulties. Guidance on best practice is needed so that timely evaluation can help optimal services be developed to improve care for patients and families.
Aims: to identify, appraise and synthesise ?best practice? methods for the evaluation of EoLC, particularly focussing on complex service-delivery interventions and reconfigurations.
The objectives are to:
1. Critically review the current methods used in evaluation research in EoLC considering the full range of issues
2. Characterise the different care settings, organisational contexts, and patient groups where end-of-life research may be conducted and consider the implications of these for different methodological approaches;
3. Identify practical, ethical, legal and methodological issues pertinent to EoLC research
4. Appraise the needs and views of key stakeholders, including policy-makers, research ethics committees, research funders and other regulators of research, health care professionals and patients, relatives and carers
5. Evaluate potential solutions to barriers created by the issues identified and
6. Synthesise the findings of the review and stakeholder consultation to develop guidelines for undertaking evaluation research in EoLC.
Methods:
The project uses a combination of methods in parallel to deliver the above aims and objectives. Initial literature scoping will clarify the questions for the reviews and consultation. Then literature appraisal and evidence synthesis will be used to address aims 1,2,3 and 4, combined with consultation with stakeholders, using the Transparent Expert Consultation (TEC) technique for aim 5. This process involves web-based consultation followed by face to face consultation similar to the Nominal Group Technique. The findings from appraisal and consultation will be integrated to provide initial guidance. Then in year 2 of the project a series of methodological ?think tank? workshops will be held. These will be similar to the retreats organised in the development of MRC-Guideline for Developing and Evaluating Complex Interventions (GDECI), drawing together experts to identify and evaluate potential solutions to barriers in areas of contention and difficulty. All aspects of the project will then be synthesised into a final guideline. The development, evaluation and implementation components of MRC-GDECI will provide a structure for the reviews, consultation and synthesis across the whole project.
The final guidance will be structured in a similar way to that of the MRC-GDECI, including case studies of best practice. Consumers and the public will be involved in the consultation and through activities already established by the applicants.
Aims: to identify, appraise and synthesise ?best practice? methods for the evaluation of EoLC, particularly focussing on complex service-delivery interventions and reconfigurations.
The objectives are to:
1. Critically review the current methods used in evaluation research in EoLC considering the full range of issues
2. Characterise the different care settings, organisational contexts, and patient groups where end-of-life research may be conducted and consider the implications of these for different methodological approaches;
3. Identify practical, ethical, legal and methodological issues pertinent to EoLC research
4. Appraise the needs and views of key stakeholders, including policy-makers, research ethics committees, research funders and other regulators of research, health care professionals and patients, relatives and carers
5. Evaluate potential solutions to barriers created by the issues identified and
6. Synthesise the findings of the review and stakeholder consultation to develop guidelines for undertaking evaluation research in EoLC.
Methods:
The project uses a combination of methods in parallel to deliver the above aims and objectives. Initial literature scoping will clarify the questions for the reviews and consultation. Then literature appraisal and evidence synthesis will be used to address aims 1,2,3 and 4, combined with consultation with stakeholders, using the Transparent Expert Consultation (TEC) technique for aim 5. This process involves web-based consultation followed by face to face consultation similar to the Nominal Group Technique. The findings from appraisal and consultation will be integrated to provide initial guidance. Then in year 2 of the project a series of methodological ?think tank? workshops will be held. These will be similar to the retreats organised in the development of MRC-Guideline for Developing and Evaluating Complex Interventions (GDECI), drawing together experts to identify and evaluate potential solutions to barriers in areas of contention and difficulty. All aspects of the project will then be synthesised into a final guideline. The development, evaluation and implementation components of MRC-GDECI will provide a structure for the reviews, consultation and synthesis across the whole project.
The final guidance will be structured in a similar way to that of the MRC-GDECI, including case studies of best practice. Consumers and the public will be involved in the consultation and through activities already established by the applicants.
