Turning Stories into Data…and Data into Knowledge

Posted June 16th, 2011 by

How do you make sense of all the information and stories that come with chronic illness? That’s exactly the challenge that the Patient Experience Team has taken on at PatientsLikeMe. Our goal is to create data visualizations that help you gain insight into your health, recognize emerging patterns and learn from one another’s experiences.

Adventures in Data Visualization

Recently, I flew to Seattle to give a talk entitled “Adventures in Data Visualization” as part of the Web App Masters Tour (WAMT). (I’ll also be presenting it again at the final WAMT event in Minneapolis, which takes place June 27-28th.) During my talk, I share our process for translating people’s individual health stories into data – which, unlike text-based stories, are something that can be measured, compared and visualized.

Data visualizations are great at helping people process complicated information quickly and answer questions that can be much harder to answer other ways. For example, is my experience normal? How are my treatments affecting my symptoms? Is my quality of life improving? What happens if I stop taking my medication? With data visualization, you can see patterns that correspond with changes to your medications, lifestyle modifications and more.

Ultimately, PatientsLikeMe is creating a shared visual language that allows your story to be part of a larger story, one that is enriched by data. We are continually working to make it easier for you to learn from the data you share, and that patients like you are sharing as well. Why is this so important? It allows you to put your story in context and find others like you. Ultimately, it allows you to see what you can do to achieve the best health outcome possible.

Have you “seen” something on your profile charts – or that of other patients – that helped you answer your questions? Share your experiences with data visualization in the comments section.

PatientsLikeMe member kbrigham


3 Comments

  1. At this time, I can only chart my A1c lab work. I’d like to be able to chart other labs, such as lipid panels. Is there a way I can add more types of lab charts to my profile?
    If this is a feature not currently available, I would like to suggest that the development team consider working on adding this feature for PatientsLikeMe users. I believe it would be a valuable tool.
    Another useful tool might be the ability to chart foods, as some of us might have food allergies or sensitivities that are impacting our health. Being able to note that a patient usually feels worse after eating dairy or having caffeine would be another piece of the health puzzle.
    Thank you in advance for your time and attention.

  2. Hi TNgirlinWA,
    Thanks for your question and suggestions. We’re working on adding additional labs for members to add to their profile. In the meantime, if you use a particular diet or lifestyle modification to impact your condition, you can add that as a treatment and leave treatment evaluations to comment on its effectiveness on any given day.

    You can also use your InstantMe to track your health, diet or sleep, InstantMe can be updated as many times a day as you like and there’s a free text area, so you can easily notate what you are tracking. You also have color coded indications to notate if you’re doing well in this area.

    Since you are part of a growing community of patients interested in charting food responses and multiple lab values, I encourage you to start a journal in the forum, chronicling your journey. You can start a thread and update it regularly with your habits and the results. Although this would not give you the data visualization you would get by documenting your treatments on your profile, it would create an incredible resource for other members of the community and also provide you with an opportunity to get feedback from others.

  3. I am commenting not on this post in particular, but about PatientsLikeMe in general.
    Every time I go onto your site and I dig deeper into what is on there I am truly inspired by it.
    My name is Simon Denegri and I hail from the UK. As well as being CEO of Ovarian Cancer Action here, I am Chair of the UK Government funded INVOLVE programme for the promotion of public involvement in research.

    We certainly do not have anything in the UK that comes close to what you are doing. Although patient groups in specific disease areas are creating online communities and sharing information, stories and data (motor neurone disease being one) there is nothing that crosses so many boundaries in the way that you do.

    I wonder if there is something in our respective cultures that has enabled you to get this initiative up and running while we still debate how to give people access to basic clinical trial information via the web.

    I was also interested to read about the various initiatives you have completed or are taking up which result in some form of partnership with the pharmaceutical industry. Does this provoke debate within the community? In the UK there are quite polarised attitudes among patients about the industry.

    Sorry to go on for so long. But I am really engaged in what you are doing. Please do visit my blog if you have time – I do mention you…

    Best wishes,

    Simon

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