Reporting on the inaugural OPEN Scientific buyout program
At OPEN Health, we bring clarity and confidence to the decisions that shape patient care. That clarity and confidence exist in part because we give our experts the space to ask new questions and test out fresh approaches in pursuit of answers.
The OPEN Scientific Buyout Fund provides OPEN Health employees with dedicated time to do exactly this. This September, to mark World Alzheimer’s Month, we present 3 recent projects that have investigated different challenges within Alzheimer’s disease and other forms of dementia. One examines how caregiver impact is measured, a second looks at what shapes access to emerging therapies, and the third considers how important research can be translated to support the people to whom it’s most relevant, the patients themselves and their families.
Different questions. Different perspectives. But one shared purpose: turning science and evidence into insights that promote better-informed decisions for patients and those who care for them.
Are we measuring what matters?
Do clinical trials of disease-modifying therapies in Alzheimer’s capture caregiver burden?
Alzheimer’s disease not only affects those diagnosed but also the people who care for them. But is that wider impact on caregivers adequately reflected in the evidence used to understand treatment value?
Our team audited 97 eligible Alzheimer’s disease-modifying therapy trials and found that caregiver burden or distress was measured in just 16 (<20%) of these studies. This highlights a significant gap between the impact experienced by families and the evidence being generated in clinical development—evidence that will ultimately influence treatment reimbursement decisions.
While advocacy organizations consistently foreground the toll of dementia on families, that priority is not yet reflected consistently in current clinical trial designs. Our findings point to an opportunity to consider caregiver impact earlier in trial design and build a more complete picture of treatment value.
[Link to the dedicated landing page with the visual abstract]
What shapes access to innovative therapies?
Lessons from HTA decision-making across major markets
Disease-modifying therapies for Alzheimer’s disease have shown a measurable clinical effect. Where HTA bodies have differed is on whether that effect is clinically meaningful and how it should be valued.
To understand what is shaping access to emerging Alzheimer’s therapies, our team undertook an AI-supported review of publicly available HTA documents from agencies across Europe and North America. The concerns raised in these documents covered clinical efficacy, cost-effectiveness, ARIA safety and monitoring, caregiver impact, and health system readiness. How caregiver benefit is measured and valued was contested, and in some assessments became central to the outcome.
The findings underscore the need to understand and prepare for the full decision environment, including how benefit to caregivers and the health system will be measured, when developing evidence and access strategies for emerging therapies.
[Link to the dedicated landing page with the visual abstract]
How can research make impact?
Making dementia research accessible to patients and caregivers
Evidence only creates impact when it can be understood and applied.
Working with Rare Dementia Support (RDS), a UK-based charity providing specialist social, emotional, and practical support to those affected by a rare dementia diagnosis, our team developed an accessible animated educational video for people living with dementia, carers, and the wider community. The video presents a recent project undertaken by RDS that seeks to capture the impact of dementia on carers’ quality of life.
The project helps bring greater visibility to caregivers’ experiences while demonstrating how complex research can be translated into meaningful communication to the communities who stand to benefit most from it.
[Link to the dedicated landing page with the visual abstract]
From scientific curiosity to confident decisions
Each of these projects started with one or more crucial questions that we as a practice are committed to asking every day: What influences access? What evidence is available? How are we communicating what the evidence tells us?
Together, they reflect how OPEN Health approaches complex healthcare challenges: combining scientific expertise, access insight, and real-world understanding to identify what matters and turn evidence into informed action.
Because behind every decision is a patient.
OPEN the project links to discover the thinking behind the research.
