Step 5: Get access to information so as to help you make decisions.
This information can take many forms and will really depend on your own situation and illness. For example, this will involve general search in order to find information on providers, diagnosis options or potential treatments - perhaps using health specifcialized search websites. This MUST also include, however, accessing your own specific health data. And, there are no 2 ways around this - this activity and data search must be accessed from Care Providers through a personal health record (PHR) or patient portals that are becoming more and more popular within hospitals and health science centers.
To truly manage your care, you need to have your information - plain and simple!
I know - this may seem like an impossible task - and this is only step 5!!. Actually, the search for complete and comprehensive PHRs will be quite a long process for all of us. What this step espouses is the need to BEGIN this process!
This means that we must start somewhere and that somewhere is with your physician or provider. Ask them for more details around your care and your labs - something more than "you are doing well and we'll see you in 6 months".
If you are to become empowered, you will need to become familiar with your very specific health indicators. As with most conditions, there usually are many factors that will contribute to your overall health and trying to learn all of them overnight will be impossible.
Therefore, you have to start small and find out more about just on indicator - and how critical this one single factor is. Once your physician sees how interetsed you are in understanding, he/she will try to bring you into the decision making as this then makes you a more responsible patient. Responsible patients are healthier patients because they understand what is truly at stake! Trust me, physicians want nothing more than to help you stay healthy - and you have to be the one to manage that!
In addition to other sources of information, there are many patient empowerment websites that will assist you ... and this is on top of the many disease specific associations that offer support. These general sites will allow you to get in touch with patients who are active in empowerment – even if they have other conditions and illnesses.