Date:
Author:

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.

Kathy Kastner is a blogger and curator at Ability4life.com – a website for adult children caring for aging parents and bestendings.com – about end of life choices. Follow Kathy on Twitter @KathyKastner.

Leave a Comment

Enter the debate: reply to an existing comment
14 comments

  1. Carolyn Thomas

    Thanks so much for this, Kathy. I’m one of the tens of thousands who have already watched Morgan’s rant (a pretty mild rant, actually – more like a plea for common courtesy for hospitalized patients) but what I didn’t know until just now was the (unnamed) hospital’s reaction to her video: “…hospital staff had been told NOT to watch or talk about the video.”

    I’ve worked in the public relations field for over three decades, including teaching classes like Issues Management and Crisis Communications, and I can tell you that there’s nothing that fans the flames of sputtering outrage like organizations that attempt to muzzle staff in this ham-handed fashion. Ironically, few strategies in fact drive hospital staff (or any of us) to do precisely what they’ve been ordered NOT to do faster than such an order itself can do. It’s basic PR 101, and it’s human nature.

    How much more productive to do as Sarah Hammill at Quinte has done in using Morgan’s video and social media presence as inspiration to other adolescent patients to find their voices, too?

    My only small caution here comes from my own very limited experience as the mother of (former) teenagers. Complaining is the normal stock and trade of the adolescent, from the tragedy of running out of Cheerios to stupid curfew rules or the bleak unfairness of life in general. While Morgan’s voice raises important and thoughtful issues that affect healing for all of hospitalized patients, I do worry about videos she will inspire in other teens that may diminish the power of the patient’s voice through the sheer volume of the noise created.

    I loved your KevinMD post, by the way. The comments are, sadly, typical as that site steadily morphs into the favoured haunt of healthcare burnouts.
    regards,
    C.

    • Kathy Kastner

      Thanks for your astute comment – I, too, think ‘rant’ overstates Morgan’s tone and common-sense comment. As for attempted muzzling: hoo boy does it have the opposite effect!

      To your point about adolescents and the noise they make (disclosure: I, too, am mother of former..) my hope/sense is that kids whose health condition requires repeated interaction with healthcare systems will – by the nature of their lives – have and make relevant comments/contribution. I was alerted to this video by Cathy Fooks of The Change Foundation – created by Children’s Hospital of Eastern Ontario (CHEO) by and with adolescents. Messages, I think, will resonate with all ages.
      http://www.youtube.com/watch?v=NIZVsbfCw8M&feature=share&list=PL1380A3FD32E58ACD&index=4

  2. Zal Press

    Bob Dylan’s “The Times They Are a-Changin'” became an anthem of change to a young generation in 1964. It encouraged hope and ambition that there were better ways, better ideas, better directions and moved a generation to action.

    Morgan’s “rant” is a rally cry of a new generation. Its a call to the young that they have a voice in a healthcare culture that for so long has viewed the voice of patients, not only young ones, with little respect. And patients have been socialized to willingly be silent subjects of treatment.

    That there is a “patient experience” movement within the institutions is verified by such eminent organizations as the Beryl Institute that is a global thought leader in patient experience. To their credit, many Canadian institutions are members and active in the pursuit of improving that experience.

    But there’s much work to do and Morgan’s voice is so important, not only as a role model to others, but to highlight the really negative attitudes that still persist. That you, Kathy, were asked not to identify the institution for fear of retribution exposes the most sinister of consequences of speaking up – an implied threat to one’s health (although in the litigious USA a legal threat is equally real).

    I found it more than coincidental that on the same day this article published, the Ivey International Centre for Health Innovation released its report “It’s All About Me – The Personalization of Health Systems”. Replace the word “Me” with “Patient” and you’ll get the picture that care isn’t about the institution or the providers, its about those who are suffering, who are in pain and anguish. Its about … patients.

    A half century after Dylan’s epic masterpiece, the light now shines on Morgan and the attitudes, practice and the times that her voice will change.

    • Kathy Kastner

      RIght on, Zal!
      And my (however optimistic) belief is that where Dylan’s times a-changing was driven by a need for political change (whatever happened to that ;-|) health care is changing top down and bottom up – partly fuelled by the power of social media, in professional and personal lives. Patient Commando being a stellar example.
      Kathy

  3. Shawn Whatley

    Wow, great post, Kathy!

    It’s sad how we (providers) always excuse terrible patient experience (noise, lights, interruptions) with reference to the ‘important work’ of diagnosis and treatment. High quality care should include diagnosis + treatment + experience.

    Thanks for writing this!

    Shawn

    http://www.shawnwhatley.com

    • Kathy Kastner

      Hi Shawn,
      Props for the post are much appreciated 🙂

      Your comments make me wonder if an every-now-and-again reminder of the patients’ point of view might serve to help shift the norm. 🙂

      Kathy

  4. Elizabeth Rankin BScN

    HI Kathy:

    Just read your blog now on the Healthy Debate and commend you for sending it on to this group to view. I met Morgan and her mother Amy at the HIMMS convention in Orlando last week. She and her mother are right where the action is going in health care, using technology to interface and bring to the attention of others what patients want, what care-providers need to know. Despite the CEO of the hospital not liking the video she did get support from nurses that did view the video!

    Elizabeth Rankin

    • Kathy Kastner

      Elizabeth!
      Thanks for the great feedback.
      I, too, think that Amy’s CareSync @caresync is very cool – and born of her experience with Morgan.
      As for the video, I’m so glad to hear there were nurses on board, in face of corporate dictates. That, unto itself, says volumes.
      Kathy

  5. andreas laupacis

    I have been thinking about Morgan’s video ever since I saw it a couple of weeks ago. It is very compelling.
    I thought of her video last week when I woke up a patient in hospital from her afternoon nap in order to talk with her. My resident had seen her the day before. The initial look of resignation on her face said it all. We were providing precisely the kind of the non-patient focused care Morgan was complaining about!
    However, in the busy hospital environment where many health care workers care for many medically complex patients whose conditions often change rapidly and unpredictably, it is sometimes impossible to coordinate visits to meet all of the wishes of patients. The reason I arrived at my patient’s bedside later than expected was because I spent longer than I had thought I would with a man struggling with the imminent death of his mom (I am working on the palliative care service). Patient-centred care for one man looked like the opposite to someone else!
    I worry that this sounds defensive, and I agree with Morgan that providers should try to coordinate their visits more than they currently do, but sometimes that simply isn’t possible. Of course, we should always apologize for waking people up, and try to make this the exception rather than the rule.

    • Kathy Kastner

      Dr Laupacis,

      Thank you so much for taking the time to comment.

      That Morgan came to mind during patient care is, in my opinion, one of the best possible ‘outcomes’: being reminded of the patients point of view. I also appreciate you sharing the considerable challenges of your day to day reality/

      I am full of admiration and respect for you who work in Palliative Care: I sit on the Steering Committee of WestPark Health Centre’s Palliative Care Initiative and it seems – as a philosophy – and an approach it embodies the principles person(patient/family)-centered care.

      Kathy

  6. Nora Miller

    Kathy, a spot-on discussion. Sure, hospitals are there to save our lives. But they can do an even better job of that by recognizing that it is the *patient’s* life, a whole person, they are tending to, and that medicine and treatments are not the sole determiner of healing and health! I’d add something to your list of non-medical improvements: always speak to the patient, even if someone else in the room seems to be there as an advisor or caregiver. To those who dismiss such suggestions as trivial or “too much to ask,” I would suggest that they consider whether some of these ideas might actually make things easier and better for healthcare workers as well as patients. But all of these improvements can be summed up in one statement, I think: the patient is the ultimate reason for medical practice, and the patient is a whole person, not a disease or an injury. Everything begins and ends with that. Thanks for continuing to raise awareness of these issues!

  7. Amy Gleason

    Thanks Kathy for writing about Morgan’s video. We continue to be amazed by the response to it, and Morgan still gets emails and posts on her blog daily. She is really inspired to make life better for patients, and I am so glad to see some comments here where people at least thought about the video when giving care. Neither Morgan or I think that the patient’s preferences can always be accommodated. But, we think trying to at least consider the patient’s preferences is a great start.

    Thanks again for the great post and to all the commenters for great comments as well.

Submit a comment