CCDR (NGO)

Including patient organisations as part of any health system automatically increases capacity and reach 💙

Today a number of NPON Australia members signed the open letter published by The Australian, calling for national action on genomic medicine. The letter calls for coordinated investment in infrastructure, population-scale programs and to prepare our workforce for the routine incorporation of genomic information into health practice. When new technology emerges, the role of supporting patients and implementing change often sits in the primary and community care space where patients tend to go for help first - particularly nurses and patient groups - yet these groups are rarely considered in terms of infrastructure and capacity. NPON organisations agreed to sign the letter, requesting the following inclusions to the letter: - that nurses be included in the workforce that needs to be included in any solutions and training opportunities (alongside doctors, genetic counsellors, scientists, and allied health workers already listed in the letter) - that infrastructure and resources for patient organisations are considered, particularly to support their roles providing information as new technologies emerge, and providing advice on policies that address the needs of patients - that Genomics Australia, which is a new federal government initiative to provide stewardship of the health genomics ecosystem and support nationally coordinated genomics policy and healthcare implementation, is established an independent body ausEE Inc. Inc, Australian Addison’s Disease Association Inc, AusPIPS Inc., CF Together, Cystic Fibrosis Australia, Cystic Fibrosis Queensland, CCDR (NGO), CMT Australia, Eczema Association of Australasia Inc, The Immune Deficiencies Foundation of Australia, Musculoskeletal Health Australia, Parenteral Nutrition Down Under (PNDU), Scleroderma Australia, Tuberous Sclerosis Australia (TSA), UsherKids Australia

Some insights today into the work CCDR (NGO) are doing taking our expertise in nurse-led telehealth to conflict settings. ➡️ https://lnkd.in/eiwt6f3i

Results of NPON flash poll collecting member feedback in relation to the Pharmaceutical Benefits Advisory Committee deferrals ➡️ https://lnkd.in/ekAzDMm4 Thanks to all the patient groups that participated and commented. Allergy & Anaphylaxis Australia, Angelman Syndrome Association Australia, ausEE Inc., AusPIPS Inc., BEAT Bladder Cancer Australia, Better Access Australia, Brain Foundation, CF Together, Cystic Fibrosis Australia. Cystic Fibrosis Queensland, Cystic Fibrosis South Australia, Fragile X Association of Australia Inc, hearts4heart, Migraine Australia, Musculoskeletal Health Australia, NeuroEndocrine Cancer Australia, Neuromuscular WA, The Obesity Collective, Painaustralia, Rare Cancers Australia, SATB2 Connect, Save Our Sons Duchenne Foundation, The Immune Deficiencies Foundation of Australia, Tuberous Sclerosis Australia (TSA)

Patient organisations provide vital services and are an important part of health systems. We couldn't live without them. Donate to your local patient organisation today 💙

Special appeal for Pathways specialist nurse services in Lebanon and Sudan The first Pathways nurse in Lebanon will commence work today. A key component is having a register of health services that remain open and accessible, to triage patients to them safely. Nurses are available to manage immediate concerns, which is particularly important for patients with cancer, chronic conditions or those awaiting treatment where clinics may no longer be accessible, and anxiety is at its peak. Pathways is also available for health professionals working in urgent care where they can refer patients to the service on discharge so that patients have support at this time. To donate go to cc-dr.org

The PEEK study with people who have experienced organ & stem cell transplants is available on our website. This is the 36th PEEK study and with each study, we continue to learn from the expertise that patients have. ➡️ www.cc-dr.org/2024autxp “I went back to the appointment six weeks later and I'd said, "So, when I'd left here, I was really angry with you."...I said, "Because you made a decision on my behalf, without consulting me". I said, "You had decided that I was going to have this surgery, without even asking me." And he said, "Well, there was no other option." But I didn't know that. Why didn't you give me the option of, say, diet or exercise? He said, "Because it was way too late for that." But you didn't tell me, you didn't give me this information. I said, "You seem to forget that you are my advisor and it is up to me whether or not I take your advice. But if you don't give me any advice, then I can't take it." Thanks to study partners Austin Health, Transplant Australia, LiverWELL, Leukaemia Foundation, Kidney Health Australia, Cystic Fibrosis Australia

We are seeking a highly motivated and detail-oriented Research Associate to join our dynamic team. This role is ideal for individuals who are passionate about research, data accuracy, and supporting the development of projects through meticulous data entry and analysis. The duty station for this role is in #India Go to cc-dr.org/careers #researchanalysis #dataentry #patientexperience #RWE

Community engagement is often about giving up control. It means we enter conversations with an open mind and without a pre-determined outcome. This is why at CCDR we have: ➡ PEEK as a platform for people to talk about their experience in the health system. The protocol is hypothesis generating which means we don’t enter the process with a pre-determined hypothesis. It’s systematic so that we reduce bias and remain independent. ➡ NPON as platform to support patient organisations as professional bodies. CCDR act as a secretariat and use the feedback from patient groups to develop a program of work rather than a platform to drive a specific agenda. ➡ Pathways as a platform for patients to access health services. The model of care allows for self-referral and focuses on empowerment for patients to be able to access the holistic care and management they need.