Who Educates Patients? Day 5, Wildcard 3

When I first got access to the internet and started to search for knowledge about my rheumatoid arthritis (RA) I used to read the CME (Continuing Medical Education) courses that were available online for doctors. Those courses were great ways to learn. Any words I was unfamiliar with I soon picked up through googling definitions.

When I found one written by my own doctor I was pleased to have an insight into the way he thought about treatment. It helped to know that he was fully aware of the recent research in the field, and did not reject it. 

Eventually that rich field of CMEs dried up, in part because they were sponsored by pharma, and the medical profession became more aware of the appearance of conflict.

My primary care doctor has many ways to learn more - journals, communications from the health care system, colleagues, conferences and through taking courses during the year. Specialists have even more avenues. Many work in academic institutions with medical libraries and good access to medical journals.

                          Might be an interesting journal 

Patients who want to read original research papers quickly find that pay walls stand in their way, even if the research was funded through our taxes. (Definition of paywall: System that prevents internet users from accessing webpage content without payment.)

This is what a paywall looks like (Elsevier)

How does patient centered care fit into this picture? This is the new phrase used to describe the more modern approach to health.

Patient centeredness is defined as:

Health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients' wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care. ²

Do many patients reading this feel that their education about health choices can be adequately covered in a 10 to 12 minute appointment? Possibly yes for a simple sore throat, but I doubt many of us rush to the doctor or clinic for minor problems that seem familiar to us.

To use information that we find online, we non-professional users of information are thought of as vulnerable patients who need guidance from professionals, and yet the professionals don't have time to guide us, even assuming that they are familiar enough with online information sources to help patients find their way to the best online information. Social media is not yet a skill that is common in the doctor's offices I am sitting in.

I think many patients do a great job of learning from one another and of using their intelligence to work their way through complex problems while they gain health and digital literacy. That is a skill though, and to suddenly learn all that you need to know when you are also sick and dealing with the very complex balancing act that is your life with illness is hard to do.

To get to the point: Patients need ways to learn. The health care system is not simple and a lot of people could make good headway in learning if they had a little push in the right direction and some encouragement.

Chronic disease patients are pushed to the forefront in this. They've had a long time to learn and observe the realities of care. With chronic disease it's a lot like Groundhog Day, the movie. Every day you wake up and the problems present themselves, and everyday you need to deal with them. You get used to it, and then go on to share what you've learned with other patients.

This is the logo from Rheumatoid Awareness Day. No surprise it is a groundhog

What I'm calling for is better access to information, online learning for patients in a coherent course of study, and  conferences so that we can learn, hear new ideas, make connections and be able to join the team in healthcare. We're the largest stakeholders and we should have input into the decisions that affect us!

Not to mention that the money comes from us too - the patients and the public.

Empty wallet

As ePatient Dave says so often, "Nothing about us, without us."

Patient View of Humira

When I first developed RA the treatment plan given by my Family Doctor was to take a maximum dose of aspirin (12  pills a day) for a three months to see if that would have a beneficial effect. Over those months damage continued to occur. Since this treatment did not seem to make a difference I found another doctor. His treatment was NSAIDs, specifically Indomethacin: That resulted in gastro problems added to the pain, swollen joints, weight loss and fatigue.                     

                                   

When I finally saw a specialist over a year later he outlined the possibilities  The most aggressive treatment was in his Pyramid of Possibilities was immune suppressant drugs.  I was prescribed gold injections and then transitioned to methotrexate.  Over the years the methotrexate was combined with almost every other DMARD (disease modifying anti rheumatic drug) possible.  I kept trying all the combinations hopefully over the years until I became more involved and informed about treatments and possible choices. 

Once I was aware that methotrexate does not actually stop damage to the joints and found out there were other choices that did stop joint damage I campaigned for treatment with a biologic drug. In my reading I had learned that biologics produced a greater sense of well-being and a better quality of life at the same time as they stopped progression of damage. 

I saw the info above in online CME (Continuing Medical Education) courses during the time that pharmaceutical companies were the major sponsors of many of them. Reports of drug trials like the PREMIER Study and ARMADA were a further influence on my desire for biologics.

I combined this knowledge with the facts of my life.  I was working full time but all other areas of my life were neglected because of  pain and fatigue.  Most of the time I was not at work was spent resting up to be able to continue to work. My exercise tolerance was very poor. It used to take me two days to recover from any efforts beyond isometrics. Now with Humira my recovery time from exercise seems normal and I am able to do more in a day than just work.

There has been great progress in the treatment of RA over the past years. Prior to 15 years ago there were only 7 new treatments found in 70 years. Now it is hard to keep track of all the new alternatives. The improvement in treatment is noticeable even by the look of the people waiting at the rheumatology clinic. No wheelchairs and very little visible damage can be seen now.

Some of my friends in online groups have had moderate or serious adverse effects that have led them to discontinue biologic drugs. However at least as many have said that a biologic has given them their lives back. That is important!  Even if my improvement on a biologic is not remission and amounts to me feeling 20% better it’s a welcome change.  

Progression is the major factor in my choice. I can’t afford to have any new joint damage. While only one active joint may sound like good control to many, when that one joint fuses it’s useless for good and the disease moves on to another one. There are no miracles in RA that unwind joint damage.

Over the past 7 years that I have been taking Humira I have been sick 4 to 5 times with colds and flu and the severity has seemed worse but not the frequency. 

I did express concern about the price before I started to use adalimumab. The “payment specialist” with the organization that Abbott uses to distribute the drug looked into methods of payment to lessen the financial impact. That organization paid my deductible for the first year to make the  transition easier.  It was a good investment for them seeing that I am still taking it after seven years.

I have been influenced by this great talk by Dr Edward Keystone called The Most Exciting Time Ever In The History of Arthritis and by Dr Shashank Akerkar's blog post called Time, tide and inflammation waits for nobody.

The choice of Humira as my biologic was mine. The Dr. I was seeing gave me a choice of the 3 major anti-TNFs. I had concerns about one and chose Humira based on the ease of use and my schedule.

Despite my enthusiasm for effective treatment I am anxious to see full disclosure of significant risks through the release of data from clinical trials. The legal action blocking disclosure of trial data by pharma companies Abbvie and InterMune is a step backwards for patient safety. There is a petition here against the lawsuit.

Their lawsuit has shut down the whole public access program of the European Medicines Agency.  Patient safety is not a trade secret! To paraphrase @ePatientDave "Give us our damn data."

If we are choosing to take these budget busting drugs we should have access to data about them.