A Dying Wish Presents Relief in Health Care Struggle

April 17, 2011 - PRLog -- When her sister was facing her final days of a long battle with kidney cancer, Ann Squire shared tearful goodbyes with the strong-willed mother of two.  Fulfilling a promise to her dying sister, Squire, a lifelong Maryland resident, has launched the website AwareOfYourCare.com to help patients and their caregivers navigate an often overwhelming health care maze.   “While caring for my sister, Terry, through her battle with kidney cancer, I was stunned to find how much information was not widely available or promoted,” says Squire.   “No one – not even our doctors or insurers – knew where to send us for some of the logistical answers we needed.   So I had to come up with an entire system on my own to deal with all the crazy tasks that burden family caregivers.”   She cobbled together a system with a 3-ring binder and a note-taking format she followed at every doctor visit.   Using this rudimentary ritual, she says she successfully pre-empted thousands of dollars worth of repeat tests and procedures that would have been ordered by unwitting health care clinicians.   Her sister’s doctors quickly warmed to the new system as they began seeing the benefits, even asking Squire to present workshops for other caregivers.

Now, in addition to a more polished version of that binder system (which has come to be called the AwareBook™), the new website boasts a daily blog with already more than 400 care-related posts, an interactive “Free Resources” section which catalogs the most useful – and often under-promoted – resources available to the public, and even a humor section which Squire hopes will grow with submissions from site visitors.   The site provides information free to everyone, and also offers a comprehensive Personal Health Record (PHR) system.   “The PHR is sort of the cornerstone of the site because it allows members to easily enter and track their personal history, family history, lab reports, notes, reminders, phone calls – anything, really – and then quickly print concise one- or two-page reports to take to their doctor.”   She says that vitals and symptoms can be tracked over time and then plotted on a graph to visually compare.   The graphs can also be printed for doctors’ records.  “I always hated sitting in a doctor’s waiting room filling out forms, trying to remember when Dad had his heart attack.   This takes that pressure off, and as a result provides doctors with a more accurate history,” Squire explains.

To accomplish all of this, Squire joined forces with four others who shared her passion and who offered complementary talents in web development, internet security, health insurance and clinical care.   Collectively, they share more than 72 years experience in the health care and IT fields.   “We were able to build a site on our own terms, with security at the core, for everyday folks like us who don’t want to have to worry about our information being kept safe.”

Squire remains driven by her sister’s mandate.  “One day,” she says, “the doctor had just left our hospital room with the news that we had only a few days left.   Terry still seemed fine, alert and even able to walk, but the cancer was now consuming her whole body.   We were sitting together on the side of her bed, staring down at our feet, in silence.   I looked up at her all teary-eyed and blurted out ‘What am I going to do without you?’ and without hesitation, just like the bossy big sister, she said ‘I’ll tell you what you’re going to do – you’re going to help others with what you’ve learned from this.  You’re going to teach them how to do this so that everyone can benefit the way I have.’”

“It took me 5 years to get here, but the site we have created offers high quality information and guidance for every patient and their family throughout the lifespan.   Everything – every link, every resource, and every product – is created with the busy family caregiver in mind.”   Squire personally checks the background of every resource in the “Free Resources” section of the site, to ensure they are of good quality and not surreptitiously feeding on vulnerable families.   “I wanted to create a one-stop shop that would place the emphasis on the ‘care’ part of health care,” she says.   “It seems everyone out there has been emphasizing ‘health’ – which is important – but not as many have helped with the logistics involved, and in caring for the caregivers.”

What advice would she offer to family caregivers looking for answers?   “There are more free resources now than ever for caregivers.   But be careful whom you trust.   For instance, I was floored to find that some pharmaceutical companies are planting sales reps pretending to be patients on patient-only forums saying things like ‘oh, this drug helped me – you should try it’ and that this practice is perfectly legal.  I would say to always be alert and ask questions.”

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Ann Squire created Aware of Your Care™ in response to her own experiences in caring for her terminally ill sister. The company provides tools and resources to help patients and their family caregivers across the United States.