Rod Duncan, MSW L. Duncan MD, MBA
Study Purpose:
To define and examine the experiences of the neurological health care consumer, to determine perceived barriers regarding neurological health care access and to assess the “value proposition ” of existing and potential future care for these neurological health care consumers.
The Neurological Health Care Consumer Defined:
We defined the neurological patient, first and foremost, as a neurological health care consumer. Neurological health care consumers are further defined by how they consume, or take in and use information and resources regarding their neurological concerns and problems.
We determined that the neurological health care consumer is, but not limited to one of the following persons:
- a person who suffers with migraines, but was never received of medical diagnosis of migraine,
- a person who has a first-time seizure,
- a pregnant woman with multiple sclerosis,
- a person with newly diagnosed diabetes,
- a woman who is undergoing her second round of chemotherapy for breast cancer,
- a caregiver of a person with Parkinson’s or Alzheimer’s Disease,
- an aging senior adult.
Study Methodology
Tier I: Quantitative Analysis
A year-long, 200 (n=200) participant, multi-tiered BASIK- type study was conducted by Neural Network Health LLC co-founders.
Specialized surveys were deplored by mail and on-site at four locations which served patients from 3 counties in Southern New Jersey, USA. Phone interviews with 10 individuals with a neurological diagnosis, in addition to 23 general study participants were included,
Study population demographics
Representative examples:
“64 year old white woman living in Southern NJ all of her life who is concerned about her memory loss”
48% of participants had college degrees or higher education
11 % were United States Veterans
53% of participants reported a neurological condition or event
81% of participants reported one or more neurological symptoms.
Participant neurological demographics
- 28% of participants who did not have a neurological diagnosis reported neurological symptoms that had not been addressed or were inadequately addressed by their current health care team.
- 63% of participants had 2 or more neurological symptoms
- Memory problems (40%)> neuropathy (37%)> walking and balance problems (34%)> chronic neck and back pain (28%) were reported in this study.
- Alzheimer’s Disease had the highest neurological disease prevalence (50%), followed by Parkinson’s, multiple sclerosis and language disorders (these 3 conditions tied at 20%)
Tier II: Qualitative Analysis:
The Focus Group Effect
The top three (3) neurological health concern trends among participants were:
- There is inadequate or absent guidance on what to do about symptoms such as: memory problems, strength problems, balance and walking problems.
- Brain and nerve care is not a part of routine health care discussions or encounters.
- Neurological symptoms and conditions are not often discussed or addressed within their encounters with health care providers.
Participants with neurological concerns asked us:
Who will help us?
Our study participants expressed that:
► Neurological symptom inquiry was superficial or non-existent for these study participants.
► The participants felt that most physicians may not feel comfortable addressing neurological health in general.
► The participants were “thirsty” for health information that addressed their brain and nervous system function.
► The participants wanted to know from their current health care providers what they could do themselves to change or enhance their lifestyle to best preserve their neurological function.
Thirty three individual voices, including the healthy aged, people living with diabetes-related nervous system problems as well as people living with cancer-related nervous systems problems were represented across three separate focus groups settings.
The Consensus Across the Three Separate Focus Groups :
✓ Enhanced neurological health care communication is lacking and essential to improve their health and health care overall.
✓ Tools that will help expand relevant knowledge about neurological health care and prevention are lacking. At the same time this knowledge was deemed essential in order to advance health.
✓ The tools will definitely include technology as a communication method.
✓ Group learning opportunities and other self-engagement activities are valued.
✓ Guided resources for measuring and evaluation of neurological symptoms are needed at the primary care level.
Study Conclusions:
From the neurological health care consumer perspective, there is a huge need and opportunity for neurological health systems and interfaces that provide access to:
- NEURO HEALTH NAVIGATION
- COMMUNICATION ABOUT THE NERVOUS SYSTEM
- PERSONALIZED NEURO HEALTH INFORMATION
- REGULAR TRACKING AND MONITORING OF NEURO HEALTH
- PATIENT EDUCATIONAL SUPPORT FOR NEURO HEALTH
Our study and our vast experience as neuroscience clinical care innovators was a focal point for the creation of the Neural Network Health’s Neuro E-Health® ecosystem.