Changing the way we think about, conduct, and translate research
All donations are tax deductible. To donate go to: www.bedsidetobench.com
Bedside to Bench is a non-profit organisation bringing much needed change to the way we think about and conduct medical research, and provide health services in Australia. We have the talent and the drive, and as we role out our programs, we need your support to ensure that we can reach every researcher and every health provider in Australia. We also need your support as we grow so that more patients can have their voice heard. Your donation will ensure your seat in history as we work together to create change.
VISION AND MISSION The inspiration behind Bedside to Bench came from Professor Robert L. Sutherland AO FAA. Rob was a pioneer in translational research in Australia and internationally, and a visionary who adopted a ‘Bedside to Bench’ approach to cancer research. He believed that by listening to patients and clinicians at the point of care, researchers could identify more clinically relevant research questions to address in the lab, for translation into policy and practice. It is from this inspiration that Bedside to Bench was developed, and it is in the spirit of Professor Sutherland’s vision that the organisation delivers community-driven services. At Bedside to Bench, our definition of community includes patients, carers, researchers, clinicians, allied health, policy makers, government and industry. All stakeholders that play a part in improving helath outcomes are part of our community. OUR MISSION IS TO: Deliver evidence-informed and targeted health education, to empower and support the community to be involved in health related decision-making; Develop mechanisms to collect community feedback and translate this into community-driven policies, practice and research; Support community-driven research priorities through research programs; and Support public health and health practitioners to adopt a Bedside to Bench approach to health care and research. Our vision is to facilitate meaningful connection between health service providers, research organisations and the communities for which they provide a service or aim to benefit. FOUNDING OF BEDSIDE TO BENCH In November 2012, Bedside to Bench was established by Catherine Holliday, with the official launch in February 2013. Bedside to Bench aims to bridge the gap between the clinical and research worlds, and ensure that patients and carers were involved in the decision-making process. In the field of health and medical research, the term ‘Bench to Bedside’ is commonly used to describe the process of translating research into clinical practice. Bedside to Bench have turned this phrase around, to drive a new paradigm in research where, by listening to patients and clinicians at the point of care, researchers can identify more clinically relevant research questions to address in the lab, for translation into policy and practice. This ‘Bedside to Bench’ approach results in research that is more clinically relevant and has a higher chance of being translated into policy and practice. STRATEGIC GOALS Bedside to Bench have set five Strategic Goals, aligned with the Mission and Vision of the organisation. The Strategic Goals will remain in place from 2013 to 2018, with operational plans developed on an annual basis. CAPACITY BUILDING Provide opportunities for public health and health practitioners to develop their skills in a supportive environment, and increase community-driven program development in the health services and research fields. HEALTH PROMOTION & HEALTH EDUCATION Deliver targeted and practical health education that empowers individual decision-making. COMMUNITY ENGAGEMENT Facilitate connection between health professionals, researchers, public and private sectors, and the community for more meaningful community engagement.
$5,000 The Bedside to Bench Internship Program offers individuals with a structured and supportive internship, where they are able to develop skills and gain practical experience in the field of public health, health education and research. The Internship Program supports interns by providing in-service and professional development opportunities, and at the end of the program, work placement support is provided to all interns. The program has been extremely popular with university students, new graduates and individuals returning to the workforce. To date, we have welcomed 43 interns at Bedside to Bench who have assisted with projects including the business development, collecting resources to assist people living with illness, the development of health education modules, writing articles about research for release on social media, and conducting literature reviews for publication. Scholarships of $5,000 will provide selected interns with access to continuing professional development through obtaining their Certificate IV in workplace training and assessment so that they become qualified to deliver community engagement and health education training sessions within their future workplace(s). This way we are helping to create a generation of health professionals that understand the importance of listening to their patients and the community, in their professional practice.
Meet Claudia Lee, one of the Bedside to Bench Interns Tell us a little bit about yourself? I’m Claudia. I grew up in Sydney and went to Brisbane for University to complete a fashion degree. After a year of this, I realised my passion and interest in food and health was more than a hobby. I then began a nutrition and media communication degree that I absolutely love (and also can’t wait to finish mid 2014)! I am passionate about all things health, nutrition, food and cooking, and hope to work in chronic disease prevention. What were your goals in taking up an internship at Bedside to Bench? I wanted to complete an internship in an organisation that combined my two study areas, media communications and health science (nutrition). Also, since my mum survived cancer, I have been interested cancer related nutrition. In my internship I wanted to develop my nutritional knowledge, apply my skills and become futher educated on foods relating to cancer prevention and treatment enhancement. Moreover, I wanted be able to help promote these health education messages in the community, to those who may not have access to this empowering knowledge. Was there anything that particularly drew you to working at Bedside to Bench? I loved that Bedside to Bench is focused on cancer prevention. I also love that it aims to inform patients and the community about chronic disease prevention, rather than solely focusing on treatment. This focus is an effective method for long term disease prevention and overall enhancement of the communities quality of life. What did you learn during your internship? Through my internship at Bedside to Bench, I learnt that a role in health promotion and nutrition requires effective communication skills. This is exciting as it enables me to combine my two study areas in a future job. Secondly, I learnt how to effectively present and format research, so that it is understandable and can be utilised by all members of Bedside to Bench in future projects. I also learnt a lot about the mechanisms of cancer prevention through foods. I now add turmeric wherever possible!
$10,000 What is important for you and your community? Bedside to Bench will conduct an annual survey including the general public, patients, carers, researchers and clinicians, and collect information in a systematic way, to inform directions in research and health service development. By doing this, the research that is funded, and health services that are developed, have a better chance of meeting the needs of all stakeholders and a better chance of being accepted and translated into practice. This will ultimately lead to smarter and more successful investments in health services and medical research. The importance of this work is that it asks the community what is important to them. Information is collected, analysed and interpreted, and then distributed to government, health agencies, hospitals and the non-profit sector so that they understand the needs of the population and most importantly RESPOND to those needs. This is a low cost/high impact project that requires funding of $10,000 to access data collection and analysis tools and software.
$20,000 Asking the Right Questions Bedside to Bench Health Promotion Programs aim to prevent disease by increasing the health literacy of the community. Programs across all disease streams are under development and begin with understanding the basic science that drives disease, in addition to information on disease prevention, diagnosis and treatments. Our programs also include how to navigate the health system and what services are accessible within their community. As an integrated model, health education programs include understanding the research process and research progress in relation to a specific disease or subject area. The aim of this approach is to increase the community’s understanding of the importance of research, and empower individuals to ask about clinical trials when faced with illness. This new knowledge and empowerment results in better individual health related choices, where individuals are equipped with an in-depth understanding of the health system. The best part about our health education programs is that it not only informs the community about disease prevention, treatment options and support, it empowers them to ask the right questions and navigate the health system. To make sure that this is accessible to everyone, funding of $20,000 will be used to develop a user-friendly web-based portal and application that allows the community to access practical and targeted information.
$50,000 Ever dreamed of being on MKR or becoming the next Masterchef? Bedside to Bench are developing a recipe book, based on foods that support healthy living and that are also useful for patients while going through treatment or after treatment. The recipe book will also detail research about the various nutrients included in recipes— bringing research to the community is after all, what we do. The recipe book will also detail patient stories and family stories so that those going through treatment, their families and friends can connect with the experience of others and be reminded that they are not alone. The recipe book is in development and we will engage famous chefs with an interest in wellness to contribute recipes. This is your chance to develop a recipe alongside a high profile chef and be featured in the recipe book. Maybe you can create your own family recipe or the next Australian icon like Pavlova?
$100,000 Cancer Care Project Cancer is a complex disease and within each tumour stream, there are unique treatment and support needs to ensure optimal patient care. Research in relation to models of care required for cancer patients tends to focus on tumour types either in isolation (by tumour stream) or collectively, making it difficult to demonstrate the level of care required for cancer types based on prognostic factors. Studies commonly investigate models of care in relation to palliative care, multi-disciplinary team care or tumour specific models of care. Cancers with poor five-year survival such as pancreas, brain, lung and ovarian cancer, have many similar characteristics in relation to the level and timing of care required. They are characterized by late diagnosis, with patients often requiring surgery within 48 hours of diagnosis. The nature of these diseases where prognosis is anywhere between a few weeks to 12 months, also means that there is a higher level of intensity in which care is required to provide support and care to patients and their families. For patients with cancers that have a good five-year survival rate such as breast and prostate cancers, it is a very different patient journey. The majority of patients who experience a diagnosis in these cancers may have treatment options for consideration, and are generally able to take some time to consider options and plan treatment with their clinical team. For these cancers of good prognosis and higher incidence, the level of support available is also generally better, not only with the level of not-for-profit and Government funding that is available for care coordination, but the general level of awareness and amount information freely available, also increase the level of care and support for decision making in these cancer types. This is important as the ability to take time to collect information to support clinical decision-making, has been demonstrated to improve decision satisfaction in patients and their families. According to Australian researcher, Patsy Yates, there is no consistent definition of the scope of practice, or clear description of the skills and competencies required to be an effective cancer care coordinator. For example, to what extent should these positions focus on coordination of different services including research, versus direct patient care. Published studies concerning care coordination have generally involved evaluation of structured programmes of nurse intervention, with participating nurses well supported and educated to perform in their roles. In reality, coordination roles are more likely to be implemented in a variety of contexts with varying levels of structure, support and guidance. There is a clear gap in our understanding of the level of care required for cancer patients based on prognosis, in the Australian context, and aligning this knowledge with coordination of care within the health system. This study aims to understand the level of care required for different types of cancers, stratified by 5 year survival rates,
and characterize the type of care currently provided by care coordinators, Clinical Nurse Consultants and/or Nurse Practitioners working in brain, pancreas, ovarian, lung, breast, and prostate cancers. This will result in recommendations in relation to the provision of coordination of care in a cost effective manner, which accounts for existing health services. The overarching aim of this study is to understand the needs of patients and carers in relation to coordination of care, and the type of care delivered by nursing staff in care coordination roles, within cancers of different prognoses. Specific objectives include: 1. To identify the aspects of care that are important to cancer patients and/or their families with brain, pancreas, ovarian, lung, prostate and breast and cancer. 2. Characterise the roles of nursing staff who care for patients with brain, pancreas, ovarian, lung, prostate, and breast cancer.
$250,000 How do young people learn about health and how to look after themselves as they get older? The major health problems experienced by young people today are largely preventable, however, there is a large gap between the services young people seek from primary health care professionals and the major diseases that young people have. Major diseases experienced by young people in developed countries includes mental disorders and Sexually Transmitted Diseases (STD’s), yet young people mostly contact primary health care professionals with respiratory or dermatological concerns. An Australian cross-sectional study by Haller et al. interviewed 450 young people presenting to 26 randomly selected family doctors. The study found that young people mainly consult family doctors with somatic complaints, mainly respiratory and dermatological complaints, and 10 % consult family doctors with psychological complaints. Yet 25% of the participants perceived they had mental illness. This identifies a gap between young people’s perception of illness, and their presentations to family doctors.
“This research will…be used to develop programs to support young people in developing positive…health behaviours.” Barriers An international review from 2007 identified the main barriers related to provision and use of health services for young people as being related to availability, accessibility, acceptability and equity of health services. The lack of availability is related to laws and policies, cost, location, lack of visibility or lack of knowledge of what the services offer. Lack of confidentiality is also identified as a major barrier for young people to seek health care. Other barriers include fear that the health professionals will ask difficult questions or carry out unpleasant procedures. The barriers related to equity of health services include differential access to comprehensive health insurance, which makes services less accessible to certain population groups. The review also found that many young people are not happy with the primary health care consultations, and will try not to go back if possible. In an international review from 2010, it was observed that young people might be reluctant to involve parents or consult the family physician in health care needs related to emotional problems, substance abuse or reproductive issues because of concerns related to confidentiality and discomfort with talking about difficult subjects.
$500,000 Bedside to Bench developed a model of care that is unique and innovative as it moves away from a clinical care model that follows behind the patient journey. It organises the health system in advance so that it is ready to receive the patient and anticipates need, rather than an interrupted patient journey in a reactive health system. Our Model takes a health system approach to integrate research as part of routine patient care, preparing the health system and adapting patient care models to be ready for the large-scale implementation of genomic medicine. It aligns advances in science with similar progress in health care delivery, ensuring that the personnel and equipment, along with policies and systems to support personalised cancer care and translational research, are accessible as new knowledge becomes available. The health system approach that our Model takes, places a focus on change management and project management, driven by implementation scientists who play an important role in the application of research into policy and practice; adding to the many disciplines required to realize the potential of personalised medicine across all disease streams. A part of this coordination of care Model includes the development of nurse specialist networks. The Networks provide professional development and support to increase the number of nurses who are interested in rare diseases, poor prognosis diseases or diseases that don’t affect large populations, such as pancreas and ovarian cancer, and some neurological diseases. This is particularly important, as these are often areas where there is little support, and where it is not feasible to fund dedicated care coordinators at every hospital or treatment site.
Nurse Specialist Networks It is important to note the emphasis on ‘coordination of care’ as opposed to the single role of the care coordinator. Patients and families dealing with rare diseas or poor prognosis diseases are faced with unique and complex challenges and can result in a combination of physical, cognitive and functional deterioration. Families must adopt extra responsibilities as the patient deteriorates and often huge financial burdens are experienced. The complex sequelae of these diseases brings the patient and carer into contact with many health professionals and navigating this care journey is very difficult. There is also evidence that patients and carers lack sufficient information about their disease and its management. Other factors identified included the complex routes that patients have to navigate to access services and lack of priority given to patients by rehabilitation services.
The suggested solutions to these barriers include the role of a specialist nurse or other health professional to support these patient groups, and their families, to access all available services. There is evidence that coordination of care helps to address fragmentation of services and improve supportive care to patients however in Australia, the role of coordinating care for patients, often changes throughout the care journey. A single responsible professional has been suggested to address the limitations of the care currently received by patients. The challenge is that there is no consistent definition of the scope of practice, or clear description of the skills and competencies required to be an effective cancer care coordinator. For example, to what extent should these positions focus on coordination of different services versus direct patient care. In reality, coordination roles are more likely to be implemented in a variety of contexts with varying levels of structure, support and guidance.
The Issues Our research demonstrated that nurses currently working in the role of care coordination, provide a level of care that requires signficiant specialisation and technical ability. From our consultation with nurses and also from the literature, it was
clear that this is a very new role, and a role that requires support and structure to ensure sustainability. For example, to date, there is no common job description or standard operating procedures to guide nurse specialists in their roles. This has meant that the nurses currently working in these roles have not had mentorship from senior nurses, have had to work in isolation and do not have the emotional and professional support of a peer-team. This also impacts the type of care received by patients. This was noted by one of the patients interviewed ‘having dealt with a few ‘care coordinators’ they seem to have different ideas of what that role entails’. For nurses, the lack of structure and support causes significant stress and leads to burnout within this cohort of healthcare workers. This may also account for the lack effective evaluation in relation to the role of care coordination, as previous research was being conducted in the context of a cohort of health professionals that lacked structure and the appropriate designation.
The Solution 1. A Nurse Specialist Network providing nurses with access to professional development and peer support 2. In-Service Programs for key sites to increase awareness of the role of the network and nurses working in coordination roles 3. Evaluation of the Network and the impact of nurses working in coordination roles to inform future policy and funding decisions There have been calls for care coordinators to be funded for all disease streams across all key sites in Australia. The fact is however, that this is not a sustainable solution and does not take into account the opportunity to leverage existing human resources already within the health system. The development of a Nurse Specialist Network will ensure that nurses in the field have access to professional development opportunities, and support from their peers. their role was and therefore, did not routinely refer patients to the care coordinator.
When you board an airplane, you see flight attendants with their name badge and the flags representing the languages they speak. This tells passengers who they can go to for information and special assistance—in a language they can understand. Through our Nurse Specialist Networks, patients will be able to enter a hospital ward and know who they go to for information and specialist assistance—nurses who have expertise in specific disease streams, who know what community and support services are available and who continue to develop their own knowledge in their field of specialization. Likewise, doctors and allied health professionals will also have a clear path of referral and know who to go to so that all patients receive the level of support that they need and deserve. As an example, placing a care coordinator, with adequate support and access to professional development, in every site that treats pancreatic cancer patients in Australia would cost over $1,500,000 per annum. The development of a Pancreatic Cancer Nurse Specialist Network would be one third of that cost, and deliver the same level of service while building human resource capacity for the future. Funding of $500,000 per annum for five years will ensure that this model is integrated into the health system in a long term and sustainable way. There is also the opportunity to assign your family name to the network, just as there are the McGrath breast cancer nurses—perhaps your family can be associated with exceptional care in other disease streams. Out Networks can also be implemented into other fields within the health and medical research system, for example:
EXPENSES Network Coordinator NSW Award HM - Level 3
COST PER ANNUM
UNIT(S)
TOTAL
$119,134.00
1.0 FTE
$119,134.00
Specialist Training Program Professional Development Program Site-specific stakeholder inservice
1 National
$50,000.00
Project Management
State-based key sites
$50,000.00
State-based key sites
Evaluation Officer NHMRC Award- PSP 3
$103,610.00
0.5 FTE
$51,805.00
Evaluation Consultation/ Software
$50,000.00
1
$50,000.00
GRAND TOTAL
$490,939.00