PIF is delighted to publish a Summary Report of Phase 1 of our Perfect Patient Information Journey project.
A key plank of PIF’s mission is to campaign for high quality healthcare information and support to be an integral part of the patient journey.
In light of the growing move towards supporting people with long-term conditions to self-manage and share in decision-making about their care, PIF has launched a project aimed at creating a model pathway to support the ‘perfect patient information journey’ for people with long-term conditions.
The project aims to:
- Identify good practice principles to ensure the provision of high quality information for people with long-term conditions.
- Develop resources aimed at supporting patients, healthcare professionals and commissioners to better access, provide and commission high quality information.
- Pilot and evaluate these resources in a clinical setting.
The first phase of the project involved conducting research on previous efforts to embed information into patient pathways, as well as talking to patients, healthcare professionals and commissioners, to identify key themes related to the provision of high quality information.
Ten key points were identified:
- Information on first diagnosis is essential.
- Information on first diagnosis can also be overwhelming.
- Information needs change as people move along the pathway.
- Every patient pathway is different, but there are certain points along each pathway where information is essential.
- It’s obvious, but information must be tailored to the needs of the individual.
- Being supported to ask questions is vital.
- ‘Dr Google’ can be a problem, but patients generally know how to filter online information.
- Local leadership and information champions are needed.
- Healthcare professionals want to do more, but time is a barrier.
- Commissioners want to do more, but need the evidence
Launching the report PIF’s Chair, Sue Farrington, said:
“This report brings together the experiences of people with long-term conditions, healthcare professionals and commissioners, to begin to create a map for how we can support health services to embed the provision of good information into their care pathways and improve the patient experience. We are looking forward to testing our findings over the next six months, to evidence the impact of providing better information and develop tools that support health services to deliver this.”
The next steps in the project for PIF are:
- Develop a Patient Information Commissioning Toolkit to raise awareness of the evidence and policy drivers that support the commissioning of high quality information.
- Develop a series of resources to support health services measure and improve how they provide information to service users, informed by the principles outlined in this report.
- Deliver a pilot of the resources, and evaluate the impact to service users, and the service, in improving the provision of health information.
The pilot stage of the project will begin next month and we look forward to sharing the results towards the end of 2017. Based on the experiences to emerge from the pilot, the findings from good practice research and subsequent recommendations, PIF will aim to campaign at local and national level for a greater policy focus on ensuring effective access to healthcare information.
The Medical Research Council’s neuroscience and mental health board has launched a completely updated mental health strategy (PDF, 736KB) to drive forward discovery science in the field.
Mental health issues, such as anxiety and depression, are estimated to affect approximately one in six people at any time in the UK and have a significant and long-term impact on the lives of individuals and their families. Mental disorders cost the UK economy an estimated £70-100 billion annually.
The MRC will work with other Research Councils; Departments of Health across the four nations of the UK; charities; industry and people with experience of mental illness.
While continuing to support mental health research through the MRC’s open competitions for research grants and fellowships, the new strategy aims to accelerate understanding of mental illness and the development of new treatments by focusing research in a number of key areas. These will include:
- A lifelong perspective on mental health and illness with special emphasis on youth and adolescence because of the impact of early life on lifelong mental health. (Work on the MRC-funded Dunedin cohort showed that 50% of mental illness started before the age of 15 and 75% by age 18.)
- Harnessing data from patients, cohorts and the NHS and employing cutting edge informatics technology and expertise supporting cohort and patient group studies. This will include working with health services and other funders to link research programmes and informatics on a larger scale, allowing better use of information about mental health in existing UK population studies, and new studies with patients, people at risk, and healthy volunteers, powered with new technology. We will provide extra support for researchers to engage with the new Health Data Research UK. This national institute will have a priority topic in lifelong mental health and will be vital in the development of capacity and methods to use new data science.
- Develop a major new investment in global mental health (up to £20m over five years in the first instance) in order to progress understanding of the interactions between biology, environment, culture, cognition and experiences during childhood and adolescence that contribute to mental health disorders and directly address the growing global burden of mental illness.
- Accelerate research and development of better pharmaceutical and non-pharmaceutical therapies (including psychological, behavioural, cognitive and digital) and early, preventative interventions for mental illness. One barrier to therapy development is that validated targets are not being developed quickly from discovery science effort. This could be accelerated by the development of validated cellular, animal, cognitive and behavioural models.
Dr Rob Buckle, Chief Science Officer at the MRC, said: “In research terms, five years may not seem a long time, but since the MRC launched its strategy for mental health research in 2012 there have been a number of advances in understanding the biological, environmental and psychological factors that influence the development and impact of mental illness.
“Mental health has been and continues to be a priority for the MRC, from funding our researchers to explore the role our genes play in mental health, through understanding brain function and cognitive processes, to developing new digital technologies to help people to live with conditions as challenging as schizophrenia.
“With a significant financial commitment to ensure the UK is at the forefront of new discovery science in mental health, this rebooted strategy sets out how we will further accelerate our understanding of mental illness with the long-term aim of developing new treatments for the prevention of, and early interventions for, mental disorders."
On 5 October 2016, the Academy of Medical Sciences and the Pharmacogenetics and Stratified Medicine Network held a FORUM workshop on ‘Health economics for stratified medicine’.
The workshop aimed to explore the ‘value’ of stratified medicines and diagnostics and the evidence base underlying new approaches to economic evaluation.
The discussions at the meeting broadly focused on three main challenges:
(a) consideration of new elements of value;
(b) a new reimbursement model which reflects this value and the needs across different stakeholders; and
(c) different standards of evidence.
Key points of discussion from the workshop included:
Building a broader definition of value for stratified medicines that incorporates aspects beyond direct health improvements such as reduced switching between treatments, patient ‘trust’ in clinical decisions and ability to work. There should be a drive to better accommodate different stakeholder needs and perceptions of value such as patient preferences.
Establishing a robust model for separating the value of a diagnostic and treatment.
Acceptability of alternative forms of evidence and methodologies used to generate such evidence as there are specific challenges in evidence collection for stratified medicines. It was agreed that there is an important role for academia in working with regulators and policy-makers to explore such methodologies. Better alignment is needed on evidence requirements from regulators, health technology assessment bodies, payers and other key stakeholders to drive patient access and provide clear signals for development programmes.
Limited evidence generation around diagnostics which complicates assessment of these technologies. It was agreed that alternative forms of evidence should be accepted where required and in general, evidence generation on diagnostics must be better encouraged and incentivised to ensure that there is a robust evidence base underlying their use.
Ensuring patient access through driving uptake and adoption of stratified innovations in the NHS and establishing flexible pricing and reimbursement models. These models must both reflect the value of an intervention, and the The Academy of Medical Sciences 5 potential evolution in value over time, as well as creating a mechanism by which innovations such as companion and complementary diagnostics, and combination products, can be appropriately evaluated.
The overarching need for a general culture change in the healthcare system, particularly amongst commissioners and clinicians, moving from a short-term focus on cost-savings to a longer-term view of the benefits of moving towards a stratified approach.
Achieving a balance between value to individuals and populations when assessing medicines, and the benefits of mechanisms such as shared decision-making in supporting choices at a personal level whilst enabling wider evaluation at a population level. It was agreed that to be feasibly incorporated into evaluation, personal utility and patient preferences must be considered at the population level, which will require societal evaluation similar to the quality-adjusted life year (QALY) measure.
The Problem Solving in Oncology series is published with the Association of Cancer Physicians, and the latest title is called Problem Solving through Precision Oncology.
Problem Solving Through Precision Oncology is:
- Authoritative: the latest book in the series from the Association of Cancer Physicians, written by 76 contributors including the editors Ellen Copson, Peter Hall, Ruth Board, Gordon Cook and Peter Selby
- Comprehensive: providing a succinct overview of the latest progress in the field with 15 clear teaching chapters to refresh knowledge.
- Practical: gives a hands-on guide for the cancer physician including 21 ground-breaking real-life case studies showing how to apply precision in practice.
- Educational: a valuable learning tool for everyone in the team, including graduate medical trainees and anyone wanting to expand their knowledge.
- To see the contents and view a sample chapter, click here
While precision oncology has huge potential to improve the well-being and outcomes of treatment for cancer patients, the challenges of application can be daunting. This book is a highly practical resource, helping clinicians and their teams make good decisions and gain a common understanding of this important new treatment area.