PatientsLikeMe - Curing through Sharing

I was diagnosed idiopathic scoliosis when I was 11 years old. During about 5 years of treatment, there were several decisions that I wonder if done differently, could significantly change how I am now. Starting from the choice of hospital and physician, later comes to the choice of treatment and post-op care. I can’t help but wondering, what if I knew the best choices for me from the beginning, or if I could talk to people who had the same disease as I did, how much better could I be treated?

Something didn’t exist at my time is now helping more people like the younger me – PatientsLikeMe.

PatientsLikeMe (PLM) is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition.

PLM provides a platform for patients to share their symptoms and experiences of fighting with disease, to find out patients who have similar symptoms and to learn more about the treatments of the disease. For instance, if a patient starts to sign up on the PLM website, she might join a specific community (e.g. ALS) with a username and a profile of her symptoms. The information of the profile is available for other users to review and comment. In my case, I can search for scoliosis and join the community to find the most suitable or advanced treatment for this particular disease, or even talk to other patients to exchange some hospital or physician information.

PLM stands against other
social media health platforms due to 
the depth and span of its data
 collected. As stated, there are 
numerous communities on the PLM 
platform. Each community is
patient-oriented. Patient data from 
whom similar conditions generate d
are integrated on the basis of
 community. Thus hospitals, medical 
research institutes and pharmaceutical companies are interested in this company and hope to use the data for treatment improvement, medicine development, or scientific research.

The data collecting and redistribution process combines ICT with personalized care delivery, and creates a virtuous cycle to improve each patient’s condition and the whole health care delivery system. However, PLM is experiencing some problem and is slowing down its development. In the next post, I will dig deeper into the problems and possible solutions.

How can ICT help in delivering personalized care?

            Yesterday, my morning call was from CVS pharmacy. It was an interactive voice response (IVR) phone call reminding me of a refill of my medicine. After dialing several numbers, I was told my medicine would be ready to be picked up by next Tuesday at my registered pharmacy. I even signed up for text alert, so when the medicine is there, I will receive a text message reminding me to pick it up. Life has changed a lot since this kind of technology is available. People may start to forget how life was when we have to do everything in person and circle the calendar on the wall to keep everything on track.

How is the technology working? The term ICT - information and communication technology, when related to health care, is often used in forms of health communication strategies, or health information technology. The concept is one of 2020 Topics & Objectives raised by the Office of Disease Prevention and Health Promotion. We can find more information about the topic from this link https://www.healthypeople.gov/2020/topics-objectives/topic/health-communication-and-health-information-technology

            Why can ICT be important for personalized health care?

“Effective use of communication and technology by health care and public health professionals can bring about an age of patient- and public-centered health information and services. By strategically combining health IT tools and effective health communication processes, there is the potential to:

• Improve health care quality and safety.
• Increase the efficiency of health care and public health service delivery.
• Improve the public health information infrastructure.
• Support care in the community and at home.
• Facilitate clinical and consumer decision-making.
• Build health skills and knowledge.”

It is not just the ICT helping distribute care to individual, the health information of individual can also be gathered to improve the information infrastructure, help the community, and build a more knowledgeable environment for the society. The exchange of information creates a virtuous cycle. With more people becoming a part of the ICT user, the health care system can be improved significantly, and the improvement can be seen in very short time.

Starting from next post, I will give some examples on ICT’s impact on delivering personalized care. Hope you find them interesting.

References

Health Communication and Health Information Technology - Office of Disease Prevention and Health Promotion. https://www.healthypeople.gov/2020/topics-objectives/topic/health-communication-and-health-information-technology

Image from http://www.alpsbiocluster.eu/autonomy-and-healthcare/e-care-leading-group/e-care-leading-group