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:
- You need to build on prior successes that would not have occurred without learning how to overcome obstacles and persist in achieving a goal. By sharing your experiences and reading those of others, you will learn to reinforce those behaviors that benefited you in the past.
- You need to seek out positive role models. MS HealthAllies will allow you to find people who have effectively surmounted obstacles to reach similar goals.
- You need to develop a strong social support network: Not all of us have a positive social support network and even when we do, not all topics or concerns can be effectively shared within our usual network. The classic example is a person trying to quit smoking who is surrounded by other smokers. It is far easier for this person to quit smoking if they connect with a network of people also trying to stop smoking. Similarly it is helpful to connect with people trying to achieve similar goals from similar backgrounds. MS HealthAllies will allow you to search out individuals and groups that match your needs and requirements and reinforce the goals you are trying to accomplish
- You must reduce negative stress reactions: your social connections on MS Health Allies will help you avoid negative emotional states and your tendency to perceive certain experiences or symptoms as harmful. The previous example I provided in an earlier blog referred to the many people with MS who tell me they avoid exercise because it makes them feel tired and sore or brings out other symptoms of MS transiently. While this is certainly true, this perception misidentifies the symptoms that may occur during or after exercise as harmful, and is used as a justification to stop the desired action. A social network will allow you to obtain support from others with similar experiences and avoid those negative stress reactions that get in the way of achieving your goals. In this example we know that exercise improves depression (mood), sleep, general health, functional performance, chronic pain and overall well being, but people continually avoid it because of short term aggravation of MS symptoms or find it hard to sustain an exercise program. The same holds true for many other behaviors that are hard to sustain in our culture. On this site you will be able to search out people trying to stop smoking, trying to lose weight and trying to persist in an exercise program. If you are a caregiver for someone with MS, you will be able to search out people with your unique concerns, people who understand the difficulty of trying to maintain a normal relationship with a loved one who may be quite different now from the person you you once knew.
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/