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.
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 as the conference description I did not feel originally that I belonged in this discussion. It was wonderful to hear that others at the table agreed with me. In fact the facilitator of our session had written a paper on that topic titled Interprofessional jargon: How is it exclusionary. Cultural determinants of language use in health care practice!
With exclusion on my mind, I transcribed this sentence from a webinar on YouTube on the topic of Patient and Family Engagement: “In summary, we can think of patient and family centered care as the umbrella term for the approach or, as then is implicit, the container concept that encompasses the elements and arranges the activities that come to define patient engagement, towards the ultimate aim of improving patient experiences and outcomes.”
It does not sound like “Let’s engage the patients!” language to me.
Here’s a definition of Patient Experience from The Beryl Institute: “The sum of all interactions, shaped by an organization’s culture, that influences perceptions across the continuum of care.”
I wonder if healthcare organizations give much thought to engaging patients and families so they can provide input and influence decisions before they are made.
This blog post by Dr. Matthew Katz, on the Mayo Clinic website, E-Patients Deserve E-Doctors: Addressing the Needs of Both to Make Healthcare Better for Everyone makes great points. Here are a few quotes from his excellent post:
“Empowering patients and doctors ensures they can work together. If patients and doctors don’t stand up for themselves, other stakeholders (e.g. hospitals, insurers, industry) may unwittingly make things worse.
Thoughtful, vocal patients, caregivers and doctors should stand together. Even when we disagree, we can respect our differences while working toward solutions, both in clinic and for the health care system. We need each other. And if we support each other, the entire health care system will be the better for it.”
I encourage you to read the whole post. The idea of doctors and patients as natural allies seems like the right choice to make.
Anet has had rheumatoid arthritis for 30 years. She spent the last 20 working full time in market research. Now health advocacy and the quality of life with chronic illness are major interests. “It’s great to have time to blog and tweet and go out for lunch”. Follow her on Twitter @anetto
- More from Here’s Your Gold Watch – Rheutired
Power Equality: Not Even on the Radar
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 Read More…Tagged Under: Dr Matthew Katz, IDEO, Interprofessional educatio, patient engagement, Rheutired
The IDEO Design Challenge
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 Read More…Tagged Under: design, empowered patient, MedX, RA, Rheutired, teamwork
Is Seeing the Doctor 400 Times Too Much?
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 Read More…Tagged Under: collaborate, empowered patient, methotrexate, patient communities, RA, rheumatoid arthritis, Rheutired, self management, weekly injection
How To Develop Chronic Patient Syndrome
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 Read More…Tagged Under: rheumatoid arthritis, Rheutired, waste
It’s All About Control
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 Read More…Tagged Under: brain exercise, chronic illness, community, Dispositional optimism and coping with Pain, health manager, journal, online group, rheumatoid arthritis, Rheutired, self management, Sense of control, stressful experiences, support
Do It Yourself Management of Chronic Disease
We can't manage our chronic disease by ourselves, unless we quickly graduate from medical school and then become specialists. That's not too likely with a new diagnosis that has an impact on your health. etsy NostalgicLinks However, to take a guess, even average people don't see doctors much more than two hours over a year. And that may be a high estimate. But even if you spent a whole 24 hours out of your year seeing doctors and other health care professionals, that leaves you with the other 364 days to take care of yourself. There is one thing Read More…Tagged Under: fatigue, literacy, management, RA, rheumatoid arthritis, Rheutired, self management
Identity and Work (Permanent labor force non-participation)
When I was diagnosed with RA I was working part time in a bank as a customer service representative. The friendships with people I had known for years and with fellow workers were important to me. But with RA fatigue and bad feet it became difficult to do that job as RA progressed. It was a gradual change but continuous and unwelcome. A TD Bank in New York. Surprised to see familiar company elsewhere. I started working part time in market research at that point and found a sit down job on the phone was far more possible for me. Read More…Tagged Under: fatigue, idleness, RA, rheumatoid arthritis, Rheutired, work