Care Mapping “How-To” Guides Now Available!

Finally! I’ve been promising a “how-to” guide on care mapping for the last few weeks, and it’s finally ready.

My partner, Richard C. Antonelli, MD and his team at Boston Children’s Hospital have made a care mapping web page possible. Expect more features soon.

We actually ended up with two guides: one for families and one for professionals supporting families. Let me know what you think!

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Waiting for the New Health Care

This morning my son fell down the stairs, using his eye brow to cushion the blow. The same place where he’s landed twice before, with the scars to prove it. This time wasn’t so bad though, so after a cuddle on the sofa with a bag of frozen peas on his enormous goose egg, a Motrin and a kiss, I loaded him onto the bus.

Throughout the day I heard from his school nurse, who is a wonderfully caring man. He was extremely concerned, and as the day progressed his concern didn’t lessen. Finally he suggested that I pick my son up early and take him to the doctor. The swelling should have gone down by this point, he felt.

For a variety of reasons, I hesitated to say I’d be right there. It was my son’s bus driver’s last day of work. They are great buddies and I couldn’t imagine what it would be like for either of them to end their relationship without a chance to say good-bye. More importantly, while I’m concerned for my son’s health and safety, I’m also concerned about pulling him out of school unnecessarily. He misses lots of school for doctor’s appointments and evaluations. My mother-sensor told me he’d be OK.

I told the nurse I’d get back to him in a minute. I then called the triage nurse at his pedi’s office. She thought he sounded like he’d be just fine. The swelling would take a couple of days; no amount of ice would do it.

I then had the awkward job of calling the school nurse back. I could hear the disbelief in his voice when I told him that I’m not coming. I did my best to explain my reasoning, but I sense that he doesn’t agree with the pedi office nurse’s take on the situation. I’m stuck in the middle of the two of them like a child of divorced parents who aren’t on speaking terms, tossing out phrases like “subcutaneous tissue” and giving him advice on five-minute on/25-minute off icing strategies. It’s not particularly fun or useful for our relationship.

I had asked the school nurse to send me a picture of my son’s bump. At first he told me he couldn’t, but he must have worked hard to get the school to bend it’s policy of not using personal cell phones to take pictures of students (because of course there is no school phone to do this with). I asked the pedi office nurse if I could send the picture to her. She said I couldn’t because they had no secure way of receiving it. They have an electronic messaging portal, but you can’t send images to it, only text. What goes unsaid is that in our current health care payment system, there’s no way for my pediatrician’s office to bill for looking at email, either.

In my mind, I envision the future. Here’s what it looks like:

My son’s school nurse calls me with his concern. I securely video conference in the triage nurse at his pedi’s office, who can see his injury. I let them talk through the medical issues, being present to represent what I know about my son and what’s important to him–staying with his friends in school and saying good-bye to his bus driver. My doctor’s office can bill for this time. Within minutes we have a plan and we all agree about it. We go on with our day. 

Until then, we’ll hobble along with a broken system and without the right tools, missing school and work unnecessarily, losing money and time to learn, or feeling guilty and awkward because we can’t all get on the same page.

Integrated family-centered care can’t come soon enough in my book.

Patients are health care workers, too.

I had an interesting experience this past week trying to participate in a health care conversation on line in a Swedish healthcare publication called Dagens medicin. Though some of the comments below are in Swedish, I think you can get the gist of what happened. I sent the following letter to the editors and look forward to continuing a dialogue with them about this subject.

Last week I read with great interest the editorial entitled, Våga släppa fram patienten som medaktör (Dare to let patients in as partners), by Inger Ekman and Håkan Hedman of the University of Gothenburg’s Centre for Person-Centered Care, GPCC. The article talked about the need for professionals to allow patients to be active participants in their own health care, and the radical change required to shift from a system-centered to person-centered system to make this possible.

As someone actively engaged in patient-professional partnership in the US, I left a comment to the article talking about some of the work we are doing to further this type of partnership in the US beyond activities outside the clinic setting. I shared how patients are partnering with professionals in activities like setting a national research agenda and conducting patient-centered outcome research and joining practice quality improvement teams.

I was a bit confused to see that several hours later, my comment had been removed. Concerned that I had made an inappropriate comment, I sent the following email to the editors:

Hej! Igår läste jag er debattartikel, http://www.dagensmedicin.se/debatt/vaga-slappa-fram-patienten-som-medaktor/, med stort intresse, och tog tid att lämna en kommentar. Idag ser jag att den är borta. Jag undrade vad det var med min kommentar som gjorde att någon tyckte att den inte var lämplig? Det enda jag kan tänka mig är att jag skrev på engelska. Jag är amerikan, jobbar och bor i USA och att skriva på svenska i synnerhet om vård är lite knepig för mig, eftersom det mesta av min erfarenhet och ordförråd är på engelska. Dock trodde jag att mitt perspektiv kunde vara något positivt för debatten.

Jag vill gärna veta vad det var med min kommentar som inte var välkommen så att min röst kan vara med i diskussionen och debatten i fortsättningen.

En intresserad läsare och engagerad patient,

Cristin Lind

It was with surprise and continued confusion that I received the following reply referring me to Dagens Medicins policy regarding who is permitted to comment:

Hej,

tack för ditt mejl. Jag har själv inte plockat bort kommentaren, men gissar att det säkert inte var innehållet i kommentaren som ledde till detta, utan att du skrev just som patient. När man klickar i rutan att man godkänner reglerna för kommentarer, har man också godkänt detta, e nean.

Vänliga hälsningar

Dagens Medicin

Villkor för artikelkommentarer

Dagens Medicin vänder sig till dig som arbetar i sjukvården och vår kommentarfunktion är endast avsedd för personer som i sin yrkesroll vill tillföra synpunkter och ny kunskap i ämnet.

Regler för kommentarer
För Dagens Medicins kommentarfunktion gäller lagen om elektroniska anslagstavlor och skribenterna är själva ansvariga för innehållet. Vi accepterar inte personliga angrepp på enskilda individer, och inte heller nedsättande omdömen om kön, etnicitet, religion eller sexuell läggning. Språket ska vara vårdat – inläggen får inte innehålla svordomar. Dagens Medicin förbehåller sig rätten att stryka delar av eller hela inlägg som inte uppfyller dessa regler, samt inlägg som inte tillför diskussionen något. Kommersiella budskap och spam raderas. Kommentarerna granskas flera gånger dagligen.

Om du anser att ett inlägg inte uppfyller dessa regler, anmäl kommentaren till moderator via länken “Anmäl kommentar”. 

Du får vara anonym, men du måste skriva en signatur.

I don’t want to make a wrong assumption, but from that reponse I am assuming that my comment was removed because I was considered a patient and not someone who was responding “in a professional capacity wanting to add opinions and new knowledge on the subject.”

Yes, I am a patient. In fact, I’m a mother of a patient, a child with complex medical needs. I have years of experience navigating complex systems and partnering with professionals to ensure that my son receives the right care at the right time, the right education at the right time, and the right access to community at the right time. In doing so, I have gained a great amount of experience which can contribute  to improved systems and deliver care with better outcomes.

Because of this experience, I have been asked to partner with professionals around health care transformation. My partners include medical professionals from leading teaching hospitals like Harvard Medical School and Children’s Hospital Boston, nationally funded research institutes such as the Patient-Centered Outcomes Research Institute and the National Institute for Health, public health administrators at the state and national level, quality improvement specialists from the Institute for Healthcare Improvement and the National Initiative for Children’s Healthcare Quality, and many government agencies. I develop and support programs which allow patients to partner in quality improvement at the practice and governmental levels on behalf of professionals who know that I can help them succeed. I have conducted and presented innovative research with and for physicians. My co-collaborators understand that it is only through partnering with patients and their families that we can create a system which is fair, effective and sustainable.

I am not the only patient partnering with professionals to drive health care improvement. There is an energized network of thousands of engaged, experienced patients like me around the world—including in Sweden—collaborating and even driving health care transformation.

From the answer I received from your editorial staff, it appears to me that Dagens medicin may not share the view that patients have anything of value to offer the conversation.

It’s disappointing not only that your policy exists, but that someone on your staff chose to use it. I think we can both recognize that it’s particularly ironic that the situation came about given the content of the editorial.

I am not surprised though, nor can I take the situation personally. All of us—patients, doctors, and professionals—have inhereted deep biases and opinions from our culture which has long favored professionals as the keepers of power, authority and expertise. Even when all of the partners are willing participants, it will take many years filled with teachable moments just like this one to create a real and lasting change.

Dagens medicin has a choice to make. You have the opportunity to support a system which undervalues the voice of those being served. You also have the opportunity to create the space for an authentic, rich dialogue that welcomes and engages all stakeholders in healthcare as a means to creating better health for all patients and more joyful and satisfying work for professionals.

Should you chose to take advantage of this opportunity, you may want to considering taking action in the following ways:

  1. Change your comment policy to accept—and even welcome and encourage—comments by patients.
  2. Ensure the regular inclusion of the patient perspective through the creation of recurring editorials and blog columns by a variety of patients and patient advocacy groups.
  3. Include patients in your own governance, programming, events and partnerships, looking for opportunities to drive innovation and collaboration, building upon the suggestions included here.
  4. Share this story and your reaction to it in your publication as a way to reflect on the challenges facing real collaboration. I can assure you that many patients will respect you for it.

I do believe that Dagens medicin is interested in delivering news that people working in health care care about.  The question is how long it will take before you realize that those working in health care include patients too.

I look forward to continued collaboration for the sake of all patients and professionals.

Warmly,

Cristin Lind

What do you think? Are there places patients just don’t belong?

More breakfast table talk

About a year ago I wrote about a brutally and beautifully honest conversation that I had with my daughter about her brother’s developmental disability. A wise friend commented that our conversation would be one of many “periodic check-ins.” She was right.

Not surprisingly, the last few weeks have created a need for more conversation.

A couple of months ago we started toilet training our son for the umpteenth time. It required intense amounts of attention, all landing during the winter holiday break, keeping us close to home and all eyes and hands on our boy (and his laundry). While he’s made great progress, apparently she’s “had enough of it,” according to the sign on inside of the bathroom door:

bathroom sign

In my defense, good ergonomics are a critical part of his success, and he’s in the bathroom every 30 minutes, so it’s less work to just leave the potty seat and footstool in place. But I get it. She puts up with a lot, and this was the last straw. Needless to say, we’re trying harder.

Then there was the breakfast table comment she made after all of the media attention that I have been getting these last couple weeks after the Huffington Post article about his complex needs. She had seen a copy of the care map on the laptop in the kitchen. “Mom, you know that web thingie that you made? Did you know that the G is for Gabe, and that he’s in the middle? Just sayin’.” Point taken.

It’s so much easier to deal with this now that we’re talking openly about it. I can imagine that not too long ago, sibling frustrations were never voiced and parental guilt just festered. Not too long ago, we didn’t acknowledge it either. But giving everyone’s experience some air and light is so much easier than denying it.

I’m so curious to hear what others are doing to support all their kids.

"Mommy, me and Daddy" according to my daughter  (age 3?)
“Mommy, me and Daddy” according to my daughter (age 3?)