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A Voice for People Affected by MS


 
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Patient-Centred Abstracts Case Study News Headlines CCSVI Research Database
UNDERSTANDING PATIENT CENTRED CARE
Patient Centred Care The importance of a patient-centred approach to MS care has been highlighted in the literature for more than a decade. It involves moving away from the ‘one size fits all theory’ by recognising the need to develop services with patients, users and carers rather than for them. The research is that the successful implementation of a patient-centred culture requires a strong leadership motivation that is responsive to different groups of patients and energises staff towards the achievement of that vision.
 
This area of the Road Map highlights some of the key concepts of this approach.  An earlier Australian case study provides examples of applying some of these concepts in a real world environment
EARLY DAYS
The 2002 publication  'A Charter for MS Services: the voice of people affected by MS' developed by the Multiple Sclerosis Society of Great Britain and Northern Island includes the following observations "Over the last decade or so we have seen the proliferation of guidelines and standards documents within the health and social care fields, written by professional bodies, government departments and disability groups. These initiatives are increasingly evidence-based, taking account of available research findings to support the guidance being proposed. The results of such research tend to be graded according to their reliability, often closely linked to the type of research carried out. Noticeably absent in most instances are the views of service users and carers themselves. These (frequently) have no place within most grading systems despite there being a clear expectation that the views of service users and carers should be guiding service provision"
BEYOND CLINICAL TRIALS
The authors go on to say "This ‘qualitative evidence’ may lack the scientific rigour of, for instance, randomised controlled trials, but there is growing acceptance that it brings a body of knowledge that not only complements these other forms of evidence, it enables a greater understanding of the decision-making processes involved in the provision of care, both on the part of practitioners and that of service users and carers" - click here for examples of Australian patient-centred testimonials. It is interesting to note that in 2011 guidelines (recommendation 8) provided by the Australian Commission on Safety and Quality in Health Care include "Research funding bodies should acknowledge the importance of patient-centred care to the health system, and this should be reflected in the distribution of funding"
 
  "Education programs should engage patients and families as teachers, educators and collaborators, rather than solely
 as cases to be studied"
 Australian Commission on Safety and Quality in Health Care - Recommendation 7
 
A PATIENT CENTRED CULTURE REQUIRES "A SHIFT IN EMPHASIS"
When introducing the concept of MS related patient-centred care in the UK (2002)  David Fillingham, Director of the UK NHS Modernisation Agency  said "and perhaps the greatest challenge is to create the time and the climate in which patients and staff can work together to plan a different way of doing things. This requires us to actively seek the views of patients about what they want the service to deliver. We then have to deliver that vision. Only then will we have a service that we can truly call patient-centred. We have to move away from the ‘one size fits all theory’ and recognise that the patient-centred approach requires us to develop services with patients, users and carers rather than for them. We must be responsive to different groups of patients and to particular needs"
RESEARCH FUNDING GUIDED BY PATIENTS, CAREGIVERS, CLINICIANS AND OTHER HEALTHCARE STAKEHOLDERS
In 2010 the U.S Patient-Centered Outcomes Research Institute was established by Congress with the aim of helping people and their caregivers communicate and make informed healthcare decisions, allowing their voices to be heard in assessing the value of healthcare options. It seeks to answer questions such as “What can I do to improve the outcomes that are most important to me?”, “How can clinicians and the care delivery systems they work in help me make the best decisions about my health and health care? It does this by supporting research that will provide reliable, useful information to help people make informed healthcare decisions and improve healthcare delivery and outcomes. The Institute's research funding is guided by patients, caregivers, clinicians, and other healthcare stakeholders.

For example early in 2015 the Institute provided the initial funding for
an American MS program known as iConquerMS™ a component of the broader based program Accelerated Cure for MS.  iConquerMS aims to establish a database of 20,000 'case histories' as told by Americans with MS to serve as a research resource.
 
No potentially similar programs were available in Australia until April 2015 at which time the Australian Government established the Australian Medical Research Futures Fund.
SUPERIOR LEADERSHIP IS NEEDED TO IMPLEMENT PATIENT CENTRED CULTURES
Leadership In 2012 and prompted by the global spread of approaches to patient-centered innovation, the well regarded Commonwealth Fund initiated a study on this topic. The Fund's mission is to "promote a high-performing health care system that achieves better access, improved quality, and greater efficiency, particularly for society's most vulnerable, including low-income people, the uninsured, minority groups, young children, and elderly adults".
 
The outcomes of this study (referenced in Pubmed in April 2013) have broad relevance. Drawing on peer-reviewed research and organizational change theory, the study’s authors identified attributes associated with the successful implementation of patient-centered innovation. These include
 
 
* Superior organizational leadership to craft a vision for the innovation and energise staff. Senior leaders must also have a tolerance for ambiguity, unconventionality, and change itself to create a supportive culture
*

Strong internal and external motivation to change, whether derived from economic competition, health reform legislation, or public health initiatives

*

An organizational mission and culture in which learning and experimentation occur at all levels.

*

An organizational capacity that has sufficient resources to implement change, including staff size, physical space, and use of technology and information systems

*

Continuous feedback loops that drive organizational learning.

  More about Patient Centred Leadership
 
ROLE OF SOCIAL MEDIA IN HIGHLIGHTING PATIENT CENTRED EXPERIENTIAL-EVIDENCE
A report published in Biomedcentral in 2013 titled  “Media, politics and science policy: MS and evidence from the CCSVI Trenches” (centering around multiple sclerosis) raises important questions about resource allocation and priority setting in scientific research and science policy. The growing power of social media represents a new level of citizen engagement and advocacy, and emphasizes the importance of open debate about the basis on which such policy choices are made It also highlights the different ways evidence may be understood, valued and utilized by various stakeholders and further emphasizes calls to improve science communication so as to support balanced and informed decision making. Well worth a read.
 
In December 2013 PubMed referenced research that observed (also with regard to multiple sclerosis) "social media technologies provide patients with novel opportunities for advocating for particular treatments; generating alternative forms of 'evidence' built on a hybrid of personal experience and medical knowledge". Researchers went on to say "Healthcare practitioners need to engage with new digital forms of content, including online social media. Instead of disregarding sources not considered 'evidence-based', practitioners should enhance their understanding of what 'experiential-evidence' is deemed significant to patients, particularly in contested areas of healthcare".  More about the role of social media
PATIENT CENTRED ADVOCACY - EMPOWERING PEOPLE TO ACT ON THEIR OWN BEHALF
On Tuesday 26 November the 2013 Australian National Disability Awards Ceremony was held in the Great Hall at Parliament House, Canberra.  Robert Pask, the winner of the Excellence in Advocacy and Rights Promotion said "The best people to advocate for people with disabilities are those who live with the disability. This underpins the work I do everywhere
Robert also highlighted some of the obstacles in 'making this happen' when he also said "Organisations need to be able to act in the best interests of people they represent, but also to empower those people to act on their own behalf - this to encourage citizenship. Something that our not for profit can easily forget in their enthusiasm to pursue corporate interests - read Roberts address. Click here for an illustration of Australian 'patient centred' CCSVI advocacy.
WHAT HAPPENS WHEN PATIENTS KNOW MORE THAN MEDICAL PROFESSIONALS?
Another interesting study published in 2013 titled "What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study" provides valuable insight into some of the outcomes and issues associated with patient-centred care. The paper observes "although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully".
 
It goes on to say "there is a role for those involved in primary and hospital care, including those supporting and training healthcare professionals, to recognise these problems and find ways to acknowledge and respect chronic patients' biomedical and practical expertise". Browse some Australian MS related testimonials
CHOOSING TO DO THINGS DIFFERENTLY
A paper delivered in conjunction with the 14th Annual Scientific Meeting of the Australasian College of Phlebology in Melbourne, Australia, in March 2011 discusses the ways in which the principles of patient-centred "innovation management" can enhance quality of life perceptions (QoL) while, at the same time, guide the diffusion of new knowledge. The paper observes
 
Innovation "Innovation is the process that renews something that exists and not, as is commonly assumed, the introduction of something new. Often the outcomes of innovation cause us to think about old things in new ways. The central meaning of innovation relates to renewal. For renewal to take place it is necessary for people to change the way they make decisions, they must choose to do things differently and make choices outside of their norm. True innovation changes the values on which a system is based. When people change their value systems the old systems struggle to make room for the new"  - more about this paper.
DEVELOPMENTS IN AUSTRALIA

In December 2010 all Australian Health Ministers endorsed The Australian Safety and Quality Framework for Health Care developed by the Australian Commission on Safety and Quality in Health Care. The framework identifies three core principles : that care is consumer centred, driven by information, and organised for safety. The Framework provides 21 areas for action that all people in the health system can take to improve the safety and quality of care provided in all healthcare settings over the next decade. The Commission was established by the Australian Government with the support of State and Territory governments for the purpose of leading and coordinating national improvements in safety and quality in health care across Australia.

THE 'RIGHT THING TO DO'
In September 2011 the Health Ministers similarly endorsed ten National Safety and Quality Health Service Standards and the tasks required to fulfil them designed to assist health service organisations to deliver safe and high quality care. In 2012 the Australian Commission on Safety and Quality in Health Care released further guidelines in a report titled "Patient Centred Care - Improving Quality and Safety through partnerships with Patients and Consumers".  The report defines Patient Centred Care in the following terms:
 
Future Directions "Patient-centred care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among healthcare providers, patients, and families - it is the right thing to do".
 
It goes on to say "A patient-centred approach makes care safer and of higher quality. It also satisfies an ethical imperative – involving patients in their own care and in the planning and governance of the health system is the right thing to do. The report identifies eight system oriented and thirteen service oriented generic guidelines to facilitate the transition of Australian health care to a patient-centred focus. - access an extract from the report that includes these guidelines.
A STATE GOVERNMENT PERSPECTIVE
The translation of these guidelines into operational practices is also a matter for individual State governments. For example in October 2011 the NSW Ministry of Health said, in relation to it's Health Professionals Workforce Plan 2011-2025  "To facilitate this, Local Health Districts have been established with a key focus on restoring local decision-making. Local Health District Boards are now responsible for leading, directing and monitoring the activities of Districts and Specialty Networks in a way that is responsive to patients, clinicians and communities.....this new District structure addresses the trend to localism and patient centred care across a continuum of healthcare settings, positioning the health system well to take a fresh look at how to best marry workforce planning with health service planning - read more
SHARING AND EVALUATING EXPERIENCES
The Australian Commission on Safety and Quality in Health Care (the Commission) said  (recommendation 5)  "To improve transparency, Australian policy makers and regulators should make data regarding patient care experience in health services publicly available via websites". The report of the Commission (pages 27 to 35) includes a number of such examples as does the UK Developed Charter for MS Services. Emphasis is placed on developing 'Regional Solutions to Regional Issues' so as to take into account existing local structures, resources, professional and service links and the needs and expectations of patients. Such solutions to be underpinned by ongoing evaluation processes recognised as reflecting a patient centred approach to care.
IN SUMMARY  - FIVE KEY GUIDELINES
In describing patient-centred care as "an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among healthcare providers, patients, and families - it is the right thing to do" the Commission highlighted several key guidelines highly relevant to the Australian MS environment. These include:
   *  Involving patients, families, carers in policy and program development, quality improvement, patient safety initiatives and healthcare design
   *  Improving transparency whereby policy makers and regulators make data regarding patient care experience publicly available via websites
 *  Education programs should engage patients and families as teachers and collaborators, rather than solely as cases to be studied
 *  Improving patient care experience' should be included as an indicator of quality and reflected in healthcare reporting and funding models
   *  Research funding bodies should acknowledge the importance of patient-centred care , which should be reflected in the distribution of funding
EMERGING TRENDS - A BETTER BALANCE IS NEEDED
It is heartening that the National Disability Insurance Scheme (NDIS) and the new consumer directed Home Care Packages program (CDC), especially when viewed in conjunction with related emerging issues, embody principles of patient-centred care. Less encouraging is an apparent lack of commitment by funding bodies to embrace these key guidelines in the distribution of MS research funding. In Australia MS research funding is, as yet, very much driven by research agendas rather than the aforementioned patient-centred indicators  - leaving it to the MS community itself to seek to raise much needed patient-centred research funding. A better balance is needed.
A CASE FOR PROACTIVE POSITIVE DISCRIMINATION
As things currently stand there is a strong case for proactive advocacy for "positive discrimination" until such time that the full spirit all of these important Commission recommendations (viewed collectively) are realised in relation to Multiple Sclerosis.
AUSTRALIAN MEDICARE LOCAL - DOES IT HAVE A ROLE IN THE MS EQUATION?
Established in 2011 the Australian Medicare Local Alliance is an Australian government funded organisation to spearhead an organised system for primary health care (the care you get outside hospitals) across the country through a network of primary health care organisations. Shortly stated the vision is "for all Australians to have better health outcomes because of safer, better connected, more accessible and equitable, consumer-focussed health with seamless links to the social care sectors"
 
This is achieved by working collaboratively with a wide range of health and non-health partners to promote better management of disease, especially chronic disease, resulting in a more comprehensive, preventative/wellness oriented view of health and improved overall health system integration. Of special significance is the aim to "improve overall health system integration, including Medicare Local to Local Hospital Networks, by integrating the primary and acute care settings". Find out about a  possible emerging regional role for Medicare Local in relation to multiple sclerosis..
 

 
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