Deborah Kan and Being Patient Episode 1
The Alzheimer’s Hub of Hope has four sections: Heroes, Highlights, Headlines and Helpers/Caregivers. This post is aligned to the Highlights section.
Do you want a resource that makes it easy to find a wide variety of Alzheimer’s topics?
Do you want a resource that presents information in layman’s terms?
Do you want a resource that is free from bias?
Do you want a resource that offers opportunities to ask questions to experts?
If the answer is yes to these questions then Being Patient is for you.
Being Patient was founded by Deborah Kan, a journalist at the Wallstreet Journal and other publications. When her mother was diagnosed with Alzheimers she used her journalistic skills to learn more about the disease, treatments, etc. However she initially failed at this, she was overwhelmed by the volume of information available, apparent contradictions, and siloed stores of knowledge.
“What drives me is the great injustice over facing long-term illness and not understanding where the truth lies. Join our community now to get the facts, the news and the support you need."
— Deborah Kan, Founder
If it was difficult for her to find what she was looking for as an experienced journalist, she reasoned it must be even more difficult for the average person. There had to be a better way. With an entrepreneurial spirit, a real desire to learn more about the disease, and wanting to make learning about Alzheimers easier for others, she quit her job and self funded Being Patient.
Clearly, the risk of quitting ones job and funding a new enterprise with her own money is a courageous act and worthy of the hero designation.
The Problem Defined
Deborah took several months to identify what people wanted to know about Alzheimers by talking to and surveying caregivers, primary care physicians, researchers, and others. A short list of the gaps she identified are:
there is too much information available, making it overwhelming and unusable; several hundred thousand hits in a google search
information is siloed in various sites so it is difficult to get a complete picture of a topic
much of the information could have bias, there is limited vetting or fact checking
much of the reporting of a topic is done by generalists resulting in a superficial analysis
most patients and caregivers don’t trust primary care providers and there is a lot of mistrust among all stakeholders
much of the information available is in technical jargon and is too extensive, making difficult to consume
there is limited communication and interaction among patients, caregivers, physicians and researchers resulting in angst, frustration and hindering progress
much information is speculative and may not be backed by science
patient and caregiver voices were seldom heard
The Problem Addressed
Deborah took this analysis and developed a better model called Being Patient. From the website it is described as:
An editorially independent news and community platform that aims to create clarity around complex health issues and be a trusted, accurate source of information for the people impacted by a disease.
Through clear and compelling reporting, we examine the latest research and debates on the prevention, treatment, and care of the disease. We find out what patients want to know and go straight to the expert community for the answers.
She founded Being Patient with one mission – to provide patients, caregivers, and carriers of the Alzheimer’s gene the tools they need to navigate the disease and elevate the patient’s voice into essential conversations on healthcare and research.
Being Patient is very clear that they want to be independent and unbiased and they are very diplomatic about not identifying or pointing fingers at biased reporting and censorship. Everything I’ve seen from them is very positive in nature. However, it is clear to me that they go out of their way to be independent because they have encountered bias reporting from others.
Much of Being Patient’s product is the reporting on news, advice, stories and support which is done by dedicated journalists that have an understanding of the complexities of brain health and care giving. This understanding provides for deeper insights, guards against bias and produces more accurate reporting than a “jack-of-all-trades” writer could provide. They are able to give perspectives and provide context that other authors may not.
Since one of their goals is to provide clarity of complex issues, reporting is written from the users perspective and provides context and analysis to help people understand. For example, some research concludes that alcohol is bad for brain health and others say it is good. Being Patient will help the reader understand how this could be by providing insights into how the research was performed. Sometimes, even after providing context there are true contradictions. Being Patient doesn’t “pick a winner” but provides the context and analysis to improve the readers understanding.
Features of the Site
Being Patient is organized in five main sections: Stories, Talks, Voices, Ask the Experts and Interactive Guides.
The stories are concise, easy to read and to the point. They are organized in the table of contents (below) or can be found via the search bar or hashtag.
ALZHEIMER’S (Risk Factors, Diagnosis, Management, Medication, Early Onset, Latest Research)
BRAIN HEALTH (Exercises, Women, Diet, Lifestyle, Sleep, Vascular System, Metabolism)
GENETICS (Testing, Apoe4, Early Onset Genes)
DEMENTIA (Lewy Body, Frontotemporal dementia (FTD), Vascular Dementia, Chronic Traumatic Encephalopathy (CTE))
Talks are essentially 30 minute podcasts and come in two types. The Expert series brings you answers from top researchers in brain health. The Perspectives series features inspiring people living with dementia or who have loved ones with dementia and other degenerative diseases. Being Patient drives the conversation by focusing on questions, concerns and topics of interest. You can also find theBeing Patient’s Brain Talks podcast on Apple podcasts.
Voices is a series of essays from people directly impacted by Alzheimer’s — those with a diagnosis and the loved ones who take care of them. They share their experiences and the advice they have for those going through the same thing. This is a unique and interesting feature that provides unique perspectives that may be difficult to find elsewhere.
Ask the Experts is an interesting feature that provides the capability to search for answers to questions that have already been answered. There are several hundred already in the inventory. If the question isn’t in the inventory, it can be asked via text boxes and Being Patient will ask an expert for you. Some of the answers may come from existing articles or podcasts.
Interactive Guides are computer based training that steps the user through a series of information and narratives. The two guides available, Alzheimer’s & Genetic testing and What to expect after a dementia diagnosis are robust and will take a significant amount of time to walk-through.
There are also reading lists, book reviews and other media analysis. Often a book’s author is interviewed which may provide enough information to decide to purchase the book or not. It may also provide insights that may not be available in the written materials.
Although the site is written from the patients and caregivers perspective, practitioners and researchers may find it useful and may use it as a way to better understand the needs of other parties.
The self service features allows the user to search topics by search bar or hashtags and makes it easy find what you’re looking for.
Being Patient is on all of the major social media platforms such as Twitter, Youtube, Facebook and Instagram and you can sign-up for a weekly newsletter.
Bob’s Take
I did a google search for Alzheimer’s which gave me 492 million results. I scrolled through page after page looking for the Being Patient site but didn’t find it. It was not in the top several hundred search results which is unfortunate since it may be the best site out there on the topic. This supports Deborah Kan’s initial assessment that finding the Alzheimer’s information a person needs is overwhelming. You are encouraged to tell others about the Being Patient site since they may not come across it through general Googling.
I really think that Being Patient’s editorial independence, professional and dedicated journalists, all encompassing scope, patient and care giver focus makes it an outstanding resource for everybody who wants to learn more about Alzheimers, care giving and treatment.