CCDR (NGO)

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.

Top-down approaches to community engagement can be problematic for a number of reasons: ➡ They miss the opportunity for genuine insight or reform ➡ Selective participation excludes certain stakeholders ➡ Direction is often aligned with pre-determined outcomes, rendering efforts ineffective and outcomes harmful ➡ Inequalities are perpetuated

Today marks #WorldHumanitarianDay. 2023 was the deadliest year on record for humanitarians, with 280 losing their lives—most of them being local staff dedicated to aiding their own communities. In 2024, 170 humanitarians have already been killed. The Centre For Community-Driven Research (NGO) supports colleagues in calling on those in power to take decisive action to protect civilians, including humanitarians, in conflict zones. It is crucial that humanitarian aid reaches all those in need, safely, swiftly, and without obstruction. #NotATarget #actforhumanity

The Groundup Q3 news is out now This marks the release of the NPON Member Audit Report demonstrating the contribution of patient groups in within the health system. This will be used to guide future work within the network and address some of the inequities that the report highlighted. NPON is now on Spotifywith some playlists to help get you though the day, whether it's staying focused, energised or staying relaxed. If your organisation would like to be 'Guest DJ', you can submit your top ten playlist. For more details ➡ https://zc.vg/hiWXI?m=0

A common question we get asked about our PEEK repository is 'Who owns the data'. That one is easy. The patient who gives the data is always the owner, whether in our own studies or others. It's that simple. Our role is as a custodian to protect privacy and make best use out of the information provided for greater good.