By Revere Kinkel MD
Director of the UCSD Multiple Sclerosis Program
How to find solutions and even a cure?
You can start helping now with MS HealthAllies and possibly win an award. http://www.mshealthallies.com/
We all know the power of the Internet to collect, sort, analyze and update data, and we generally accept the validity of the information we glean from our searches; Internet search references such as Wikipedia are now acceptable in school research projects at all grade levels and we share and learn from our social networks, particularly Facebook, on a daily basis. “To Google” is now considered a commonplace verb --an eponymous anthimeria for those of you who are etymologists -- referable to any internet search. Many of us continue to fall into the all too human habit of putting too much faith in single, unidentified sources (think blogs identified only by a username), but this is becoming far less common with time and experience.
Our smart phones have increased our flexibility and power to share data on a nearly continuous basis (also referred to as real-time data); they can track and notify vendors and contacts regarding our locations, sales deals, traffic conditions, our activity levels, our mood states, our caloric intact and even our heart rate and temperature. Tweeter feeds can even be used to identify and track the spread of epidemics.
In fact there are really only three hurdles to surmount before we recognize the full power of the Internet to collect, analyze and share data that provides useful information to us in our personal lives, especially as it relates to our health: data harmonization, maintenance of privacy and our own imaginations. The need to harmonize the data collected in health care encounters to allow linking of data sources (ex. different electronic medical record systems) or to catalog large datasets is being addressed through the nationwide PCORI network funded through the Patient Centered Outcomes Research Institute (PCORI) and the BD2K (Big Data to Knowledge) Project funded through the NIH.
Privacy issues will likely be with us for a long time but can be addressed through readily available mechanisms such as site verification, firewalls and strong passwords with ID/password confirmation. It is also important to separate crucial personal identifiers that link all your data sources. Unique to health related data is the requirement of HIPAA compliance and the requirement of providing adequate consent for research that is flexible and easy to revoke, if necessary.
How does this relate to the Health Care Journey website? The website is currently a vehicle for sharing information from validated and/or identified sources (people like me or the NMSS) through links to other websites, content we create or blogs that we write. All of this information may contain opinions not completely validated by controlled research studies, but you have the ability to know exactly who is the individual or individuals providing the links, creating the content, or expressing the opinion on a blog, and may choose, based on the biographical information and disclosures provided, to apply different weights to the opinions expressed.
This function of the HealthCare Journey website, what we call a “virtual MS Center”, is important but it limits your ability to learn from each other and our ability to learn from you. Most of the interactions on the site revolve around you the reader needing an answer to a question and receiving a prompt direct answer within the limits of the medium we are using. To be truly powerful and learn from your collective experience and unique characteristics requires additional functions on the website that will be introduced in the next few months:
First, we need a secure, personal site for people with MS to provide any information they desire about themselves and search for people with similar issues, concerns and experiences. We have just launched a beta version of this site, called MS Health Allies. Why is this important?
Accommodating to MS and repeatedly finding solutions that work for you and your loved ones is hard and requires a quality that psychologists call self-efficacy, defined as the belief that an action will have a desired result AND the belief that you will be able to sustain this action. Although I wrote a prior blog on this issue, the importance of this topic warrants repeating the main steps to achieving and maintaining self-efficacy:
MS HealthAllies will allow you to connect with other people with MS individually or you can reach out to many and form your own group. You can run these groups, develop rules of communicating and rules of behavior; provide links to useful information for your group. Your collective experience will create an amazing resource that allows people to achieve their goals with greater ease in shorter time intervals. The more you share or, as the techies call it, the greater the granularity of the data you provide, the more you and others will learn from one another in your journey.
There is one unique feature of MS HealthAllies that is not available in any other social network site. We have created a button on the site that allows you to directly ask an MS expert in our Virtual MS Center a question. Let’s say you are communicating with one or more MS HealthAllies’ members about a topic and this discussion raises a question about an unresolved issue or a concern about the validity of the information being discussed. Simply press this button and ask a question and we will respond to the best of our ability as soon as we can.
You will hear more about this effort over time as we role out individual components; for now stay tuned to notifications from the website and sign up for the beta test version using the link below. In the very near future we will announce a sign up challenge with awards for certain activities. Without giving away too much information let me hint strongly that there will definitely be awards for people who sign up for the beta test and continue to participate after the role out of MS HealthAllies.
You can sign up here http://www.mshealthallies.com/
The medical information and opinions on this site are provided as an information resource only, and are not to be used or relied on for any diagnostic or treatment purposes. The information and opinions expressed do not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.