Power Equality: Not Even on the Radar

Posted on by Here's Your Gold Watch - Rheutired

Wednesday, 7 January 2015

Late last year I was pleased to be invited to attend a conference called “Reaching the Summit: Leading the way from Interprofessional Education to Practice”. Having patients included with educators and practitioners meant that the healthcare stakeholders sitting around the table were representative of more of the members involved in the health team.

It was a little disconcerting when I looked back at the list of Summit Registrants prior to writing this post and saw that under the title and the occupation columns the patients were all listed as “Patient Guests” in both columns. That seems to imply that our place is not secure – maybe it isn’t a given that patients will always be invited to participate.

We’re making the right connections At the event a large part of the afternoon was spent in breakout sessions, each one with a patient representative. The teams were composed of people working in hospital administration, in medical education, clinicians, allied professionals and, as at the IDEO Design Challenge, the variety of opinions led to strong and useful conclusions and strategies.

At one point in the session I commented that the very words ‘inter-professional collaboration’ on their own seem to exclude patients. With that [...] continue the story

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The IDEO Design Challenge

Posted on by Here's Your Gold Watch - Rheutired

The Design Track for ePatients at the Stanford Medicine X Conference this year was an experience that demonstrated the value of teamwork. Where else could you see a cardiac surgeon, a researcher, GP doctors and a venture capitalist working with a patient to find answers to a health problem posed by a patient?

This is the way the challenge worked: two months before the MedX Conference the patients involved submitted problem statements to Dennis Boyle and his team at IDEO; participants got a shorter list back with requests for clarification and also received background links about design thinking and a copy of the book Creative Confidence Unleashing the Creative Potential Within Us All.

To start our day at IDEO we had a tour. The company has done amazing work in design and their workplace is full of people doing work that they love. Then we broke up into teams and I presented my ‘How Might We’ problem statements. We had a terrific facilitator, Tanya Rinderknecht, who nudged us back on track when we started to get too ambitious.

In design thinking there is much consultation and questioning with the users of the potential solution. The statement the team chose to work on was [...] continue the story

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Is Seeing the Doctor 400 Times Too Much?

Posted on by Here's Your Gold Watch - Rheutired

This is a cautionary story of how it can be expensive in time as well as money to know too little about your own health and treatments.

The 400 visits in the title is what it is because for seven years I went to the doctor’s office for weekly injections of methotrexate. Year after year I dealt with snow, rain, ice storms, paying for parking, dealing with the difficult receptionist and wasting time waiting. The only positive side is that I now know my doctor very well.

After that endurance contest I can say that for me the biggest advantage to being involved in a clinical trial was a conversation with a trials nurse who said “Why aren’t you doing the injecting yourself?” A classic “Had I But Known” was my answer. If I had had the faintest hint that I could have been doing it on my own I would have. This author was one of the queens of the HIBK (Had I But Known) genre That marked the last time I had someone else take care of my injections. Now with social media, people who are connected to other patients can find that answer much faster than I did.

Thinking of how many [...] continue the story

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How To Develop Chronic Patient Syndrome

Posted on by Here's Your Gold Watch - Rheutired

There are many stories about waste in healthcare. Some are ridiculous and some are based on misunderstandings and lack of knowledge.

Here’s my waste story: While I was being treated for RA, injectable methotrexate was prescribed for me because the pills caused too much nausea. The shots were intramuscular and I assumed that I needed to have a doctor administer the injections just like with gold shots.

So every Wednesday afternoon I would leave work early, go to the doctors office, park and wait (and wait). This went on for seven years. That means 364+ extra doctor visits and at least 1000 hours of my time that was wasted. Not to even mention the white knuckle winter trips.

My rheumatologist then happened to suggest a clinical trial. As part of the start up process for it I met with a nurse for an interview and in the course of the discussion she asked why I did not inject myself. Thank goodness she did.

I had seen at least 10 different doctors in those 7 years, allowing for travel, locums and vacations and not one of them said a word about this possibility. At last I was spared the weekly visit!

That is why I suggest [...] continue the story

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It’s All About Control

Posted on by Here's Your Gold Watch - Rheutired

10 ways to maintain a sense of Control with a chronic illness

It’s easier to cope with chronic illness if you feel that you have some control over your life and your health. Feeling that everything is just spinning away from you makes life more difficult. Here are my first and best so far ideas. More suggestions are always welcome for a list like this. Please leave them in the comments. We all love to hear tips.

With chronic illness you are forced to be your health manager so it is up to you to gather information and to make better decisions. You need to learn skills for this complex task as you go along, because the days of good health and no worries are behind you, though there is always the hope of having them return. As you go along you will find a management style you are comfortable with.

The first suggestion I would make is to join an online group or community.  They can be a great source of information and encouragement.  It’s harder to find a physical real-time group than one that is on-line. It is also easier to spare the time for online efforts. Yahoo has a more old-school [...] continue the story

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