Care mapping

Care mapping is a tool and a process that I created to stay organized and communicate with my son’s care team, including teachers, friends, and family. It’s a snapshot that shows the people, people, programs and resources our family relies on to remain healthy and strong. Care mapping is an easy way to show a lot of important information without having to give a long explanation. It’s been described as a picture that tells more than a thousand words.

Care mapping is being further developed by me and Dr. Richard C. Antonelli of Boston Children’s Hospital, a pediatrician and national expert on care coordination. We have received tremendous feedback from both families and the professionals who support them who want to learn more about how they can use care mapping themselves. Below are some resources.

Using a care map
You can read about how my first care map came into being and how I use it here. The publication Health Affairs also featured care mapping in a video as part of a series about patient engagement.

Making (or helping someone else make) a care map
If you want to make your own care map or help someone else make one, Dr. Antonelli and I have written short guide for parents and professionals that you can find here.

Copyright Cristin Lind, 2012. For permission to use, please see the instructions below.

Copyright Cristin Lind, 2014. For permission to use, please see the instructions below.

Using my care map image in a publication or talk
If you are interested in using my care map image in a presentation, text book or talk, please send an email to: caclind (at) gmail.com with a description of how it will be used. This image is highly personal to our family and it is important to us that it be used in a way that reflects our family’s strengths. You don’t need to ask permission to link to, share, tweet about, or simply think fondly of the blog or any of the posts about care mapping. That’s just awesome!

Other stories about care mapping
Our family’s care map got a lot of publicity when Lisa Belkin wrote about it in the Huffington Post in 2012.

Since then, many other families have created their own care maps and several have shared their experience.

If you have an experience that you want to share, please drop me a note! I’d love to have some guest bloggers write about their experience with care mapping, or simply to link to yours.

Care mapping in research
Dr. Antonelli and I have also done some preliminary research about care mapping and presented it as a poster at the 2012 Harvard Medical School Primary Care Innovation Conference and as a poster at the IHI European Forum in 2014. By interviewing families and professionals, we have identified many, many more ways that care maps can be developed and new ways to use care mapping as a process to make healthier families and stronger partnerships with professionals. Stay tuned!

 

16 Responses to Care mapping

  1. Love your care mapping! I am an administrator at a pediatric clinic in Alaska and use maps everyday. Check out mindjet.com and look at that software. You can add tags, resources, dates/times, etc and use those to sort and filter. This software can help take your tool to the next level and continue to raise the bar for coordinated care.

    • Cristin L. says:

      Thanks Leigh Ann. I’m very aware of mindjet and software alternatives. I’m often torn–part of me feels like as soon as I have a computer screen in front of me, it sort of ends up driving the process, instead of my brain. But it definitely adds more useful functionality, and we are working on that.

  2. Nicola says:

    Hi Cristin,

    my name is Nicola and I am a nurse and Junior research fellow.
    I read with great interest your Care Map and I would be interested to make it evaluate by of our department’s staff and, possibly, perform an Italian translation of your tool.
    I have already contacted Dr.Antonelli for HHCM.
    Sorry for writing here but I don’t have any different email of you.
    Thank you for your help.

  3. Nicola says:

    Hence there is moderation, I’ll give to you my email in the case you prefer to write me.
    nicmazzoni@gmail.com

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  6. Love your mapping too! we debated yesterday in Brussels about cancer patients mapping their disease and coming across your website I would like to waive hello to a similar minded person.

  7. Scott Bates says:

    Hi Cristin!
    (Feels like I am a bit late to this conversation…)
    I am at the Children’s Hospital in Colorado and we are working on a care coordination project for families that have a child with medical complexity. One thing we are doing is interviewing families when they come in to clinic for a well child check. From this interview, we then develop a plan of care that includes goals for their child (medical and social), the members of their care team and an “access plan (who to call when they need help/support). We then connect with these families to help them navigate the myriad systems they come into contact with.
    In order to quickly explain our project, we were thinking of showing them your caremap and then showing them how we can help to organize some of the chaos. Is it okay to use your caremap in this way? Do you have a “Caremap 2.0” that shows when/how a care coordinator may have been able to help you navigate these systems?
    Thanks – by the way, I have learned so much from your blog posts and feel inspired to continue my work here from your stories of hope!
    -Scott

    • Cristin L. says:

      Hi Scott. Sounds interesting. What are you asking in the interview? When you say “we then develop a plan of care,” does that mean that the families develop it, or your practice does? You are welcome to use the care map image, just please acknowledge. To your last question, I don’t have info on how a care coordinator works to help navigate, but would definitely reach out to my good friend at Children’s Boston, Rich Antonelli for that info. I personally have never been offered a care coordinator (except to pilot the service during our pedi practice improvement project) and would probably have benefitted. Mostly my advice has come from other moms and dads. In fact, I admire the Rhode Island project that uses parents as CC navigators, and see that as the most promising model of all–there’s a lot that people with lived experience can offer. Good luck!

      • brenda hayes says:

        Hi! What is the RI project that uses CC navigators? Community Care? Always interested in something that works better!!

        I also am interested in receiving examples of others Care Plans (even though I know they are individual to each person). They can be redacted for privacy…we learn from each other so much!!

        The CARD Program and others in Florida are using the PATH process–similar; It’s a basically a verson of the PERT chart;. Difficult sometimes getting information about Person Centered Plans to learn what are such possibilities to think about.

        Thanks! Brenda

  8. Scott Bates says:

    We develop the plan of care in partnership with the families that we work with, so the plan includes both medical goals and those that are more “social” in nature (but still important!).

    I’ve heard about the Rhode Island model and we are currently looking at incorporating more parent voices into our project here, too.
    Thanks again! Take care!

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  10. Cristin – I work for an organization called the Association for Community Affiliated Plans (ACAP) and we will soon be publishing a paper highlighting the work that Cook Children’s Health Plan and other medicaid programs are doing with children with medically complex conditions. I actually emailed a copy of the paper to you at your email address. We would like to ask you if we can use your care map for our paper, as it really helped us and the researchers understand how health care works for children. Would you be willing to let us use it? If you have any questions at all about how we intend to use the paper, please let me know. I can be reached by email (jbabcock@communityplans.net) or by phone at 202-204-7518.

    Thanks,

    Jenny Babcock

  11. Cristin – I work for a group called Association for Community Affiliated Health Plans (ACAP) and we are working with NORC at the University of Chicago to produce a paper describing the work nonprofit Medicaid health plans are doing with children with medically complex conditions. May we have your permission to include the graphic in the final published report? We would greatly appreciate the ability to have it help convey insight into these important issues, and will include any attribution you direct.

    Thanks for your consideration,
    Jenny Babcock
    jbabcock@communityplans.net

  12. brenda hayes says:

    Love your blog and your Care Map. I shared with a rep from a Legal Aid to hopefully see if we can get the idea of what all is involved with a SP Nds Family to help improve Court’s insight to improve for better understanding in dealing with Guardianship, etc. Having been there and done that 47 years ago and now as a custodial Grandparent; I “get it”. Also, this is a technique I used many years ago in Organizational Development/Effectiveness. Right brain process of brainstorming an idea,, process…it’s quite helpful with so many things in our lives; especially for predominantly Right Brained people. I am like you; I think the use of the computer/software would take away from the creative “brain” process. Keep up the good work…and thanks for sharing, Hugs, Brenda

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