The next generation of ePatients

As with any parent whose child has a serious health condition, Amy Gleason is actively involved and ever watchful of her 15-year old daughter, Morgan, who has a life-threatening autoimmune condition called Juvenile Myositis.

Amy and I are ePatients – the ‘e’ includes: being engaged, empowered, and most always incorporates gathering information and, often as important – support –‘electronically’ with the internet a source of peer-to-peer support. As Pew Internet Research Reports:

“Social network sites, blogs, online communities, email groups and listservs, and other tools allow people to express themselves in ways that respond immediately to people”

When I met Amy in California at Stanford’s Health2.0 Conference on the future of healthcare, she told me that although her daughter Morgan is often hospitalized, she’d much rather talk about horseback riding.

That may be changing.

A recent hospitalization left Morgan feeling frustrated and her mother, Amy video’d Morgan as she ranted about getting woken up repeatedly during her hospital stay asking – ‘don’t they know I need sleep to get better?’

This video rant was shared among the ePatient community, and was posted to Forbes Magazine’s website, with the heading ‘This 15 year old absolutely nails what Patient Centred is – and isn’t’  along with commentary by Dave deBronkart, a leading ePatient voice.

Morgan’s message has reached across borders: at the Ontario Hospital Association’s Social Media in Health Care Conference, several participants – at the conference and in the virtual world – tweeted a link to the Forbes post.  At a recent Toronto meet-up of the health care social media community, Sara Hamil – social media Director at Quinte Pediatrics and Adolescent Health Centre said she was so inspired by Morgan’s video that it would be shared with Quinte’s adolescent patients to give them the confidence to find their own voice.

It seemed like win upon win for Morgan as her video continued to make an impact.

Amy, Morgans’ mom sent the hospital where Morgan receives her care a very nice, polite email with a link to the Forbes article. The hospital reply, according to Amy, was dismissive and patronizing of tone.  (I’ve been asked not to name the hospital to prevent any negative repercussions but suffice it to say it’s world-renowned.)

It then came to light that hospital staff had been told NOT to watch or talk about the video, and let Morgan know this. Multiple times.

At first, this pushed Morgan to tears.

But then it pushed her to start a twitter account,  YouTube channel and blog with the tagline – I am a patient, and I need to be heard.

For me, this is all good: proof of the power of patient connectivity and digital platforms – the meat and potatoes of the ePatient – in forcing much-needed patient-centered change. Even something as seemingly basic and obvious as getting sleep as part of getting better has fallen to the bottom of the list of ‘must have’ in patient care – not to mention ‘patient-centered’ care.

But then again, hospitals were never designed around patients, but rather, around clinicians’ needs.  While health care providers need to have a productive and efficient workplace, it is possible for this workplace to accomodate patients’ needs at the same time.

I wrote a blog a few years ago suggesting non-medical suggestions hospitals could take to be more patient-centred. These suggestions included simple things:

• Gowns: There has to be a better way to protect patients’ privacy and still be accessible to clinicians
• Privacy Curtains: Print them with Canadian Art to make the space more cheerful
• Walls: Paint walls in warm colours, and use wall colours to help patient and families better navigate around the hospital,
• Bedding: Up the thread count – make it easier on patients’ skin
• Be Quiet!  Hospitals are a place of healing and should be quiet, and restful. It can be very distressing when staff are banging doors and drawers and yelling at each other down the halls.

My blog was posted on KevinMD – a blog maintained by ‘social media’s leading physician voice’ in the United States. The reaction, and comments on my post, took me by surprise. These are a couple of the comments I received.

 “Trivial, trivial, trivial”.

“A hospital exists to save your life.  That’s worth dealing with a few inconveniences.”

“And while they’re at it, maybe they could quiet all of those alarm dings and get rid of the call button..”

“Alarms and machines are noisy. Staff have to communicate with other members of the healthcare team, phone calls have to be made, labs have to be done, procedures performed”

Only one commenter supported me, they worked at Georgia Health Sciences Medical Center in Augusta and wrote about the measures that have been in put in place at that organization to improve patient-centred care.

“We have hundreds of patient advisors providing direct input into not only the plan of care, but in the design of all our facilities”.

There is a better way.  And, as Morgan struggles with major health challenges, she is also leading the way for a new generation that will challenge the status quo of health care and advocate for the small things, such as uninterrupted sleep, that can make all the difference in a patients’ experience. And I applaud her courage and forthrightness and poise: it’s her generation that can build on the efforts of her elders, gathering confidence through response such as this video has gotten: 50,000+ views to date.