When this review of the aHUS patients research agenda began, the question was asked “is a patient research agenda worth while?”.
The expert who gave an answer was Chat GPT ( already confessed to that!) and this was the answer we received
“Yes, having an aHUS research agenda created by the aHUS patient community can be incredibly valuable. Patient-centred research agendas are essential for several reasons:
- Patient Priorities: Patients have unique insights into their condition, experiences, and the challenges they face. Their research agenda reflects the topics and questions that matter most to them.
- Research Relevance: A patient-driven research agenda ensures that research projects and studies are focused on addressing the issues that have the most significant impact on patients’ lives.
- Empowerment: Involving patients in setting research priorities empowers them to actively participate in the research process, making them partners in advancing knowledge and care.
- Improved Outcomes: Research aligned with patient priorities is more likely to lead to interventions and treatments that better meet the needs of those living with aHUS.
- Community Engagement: A patient-driven research agenda can strengthen the aHUS community, foster collaboration, and raise awareness among healthcare providers and researchers.
While traditional medical and scientific research remains essential, patient-centred research agendas provide a complementary and invaluable perspective. Patients and their families play a crucial role in advocating for and guiding research efforts related to aHUS. Such initiatives are worthwhile and can drive positive change in research and care.”
From the sources it used this is a very insightful response on this topic.
In our Christmas blog our expert Chat GPT featured again and among the questions posed was “If you were to give a research answer to aHUS patients as a present what would be your priority for aHUS research in 2024?”. This was the response:
“If I were to prioritize an area for aHUS research in 2024 based on the existing knowledge up to my last update in January 2022, I would consider focusing on the development of more targeted and personalized treatments. This may involve:
- Precision Medicine: Further understanding the genetic and molecular underpinnings of aHUS to develop more personalized treatment approaches tailored to the specific genetic and immunological factors of each patient.
- Early Diagnosis and Screening: Improving methods for early diagnosis and risk assessment, allowing for prompt intervention and preventing complications.
- Long-term Outcomes: Researching the long-term effects of aHUS and the impact of different treatments on patient outcomes and quality of life.
- Complement System Modulation: Exploring innovative ways to modulate the complement system to reduce disease activity and minimize the need for long-term treatment.
- Patient Support and Quality of Life: Investigating the psychosocial aspects of aHUS and developing strategies to enhance the well-being and quality of life of patients and their families.
Please note that research priorities may evolve based on scientific advancements and emerging needs within the aHUS community. Consulting with researchers, healthcare professionals, and patient organizations would be essential in setting research priorities for the coming years. “
It has to be admitted this is a very good answer, producing an agenda for an aHUS Research. Condensed into 5 topics. But Chat GPT’s qualification to what was said makes several good points,
The aHUS science is evolving and there will be new or priority changes in patient community needs emerging.
Scientific progress on answers for aHUS was evident in Part 1 of this review. Some awareness of emerging patient needs exists but not documented fully.
Looking at both the current version and Chat GPT’s suggestions it is evident that what may matter most to aHUS patients is :
having the best of health outcomes from the most effective suitable treatment options after the most rapid of accurate diagnosis in the best of long term healthcare settings.
All research that matters to patients therefore should be targeted towards that end in an agenda that fully expresses how what is important to them can be achieved.
it is clear that the current six year old agenda needs review, which is what these articles are about and then revising
But but how can that be done? Part 3 of the review will need to look at that.
Article No. 641