Publicly funded academic efforts to research and develop software technologies frequently suffer from the following hindrances to wide market adoption: 1. They result in open source tools which require expertise to install, configure, and use (e.g., see the myriad of open source, complex tools for bioinformatics and genomics, or most python-based solutions). 2. Support and maintenance are often left to the end user, ...more »
With most providers utilizing several different electronic health records and results from visits not share in the appropriate time frame. Or one shared patient portal related to his/her Alzheimer appointment. Recently has to take my family member to an urgent care facility as her PCP doesn't have weekend hours and we were at this appointment for five hours. My family member was severely dehydrated and required an ...more »
A dedicated databank should be created for those interested in Alzheimers trials. If the program could incorporate data mining, where information entered by the neurologist could instantly exclude people from certain trials but include them for others. If the program could, instantly, populate a list of possible trials in which patients met inclusion criteria, then patients and their families could research which of ...more »
The VA provides 1741 domestic medical facilities with some degree of mental health and/or primary care provided to veterans and qualifying family members. Eight conditions are targeted in Mental Health, but not Alzheimer's. However, screening for dementia is offered, so could be a tapped as a source of recruitment for research. A cursory review of the attached report appears to include any efforts aimed at a large population ...more »
With each successful clinical study recruitment effort, the lessons learned should be added to a national list of best practices. The same goes for unsuccessful recruitment efforts in discovering what did not work and why. These best practices must be shared online in a way that is easily searchable (e.g. recruitment promotion, study materials, phone screening, etc.) so that study teams can create their plan using the ...more »
Physicians often do not tell patients they are diagnosed with dementia or Alzheimer's disease (AD), yet it might be stated in medical records. They don't want to burden families, so then they don't even diagnose patients with AD/dementia. Patients are hesitant in seeking information, services, or a diagnosis and important discussion about signs/symptoms of AD/dementia with a doctor possibly because no protections are ...more »
1) Encourage healthcare systems and health insurance plans to use clinical trial awareness initiatives, evidence-based brain health resources and partnerships as an incentive and benefit for their beneficiaries/clients and subscribers. 2) Engage the Centers for Medicare and Medicaid Services (CMS) as a partner, examining such approaches as including clinical studies participation opportunities as part of the Star Rating ...more »
Partner with healthcare systems or insurers for research referral.