Why Is My Silo Two Miles Away?

Today I watched a youtube video of the Institute of Health Services and Policy Research (IHSPR) Policy Rounds - Improving Care of Multiple Chronic Conditions The webinar is from March 26, 2014. I found out that in Ontario chronic disease accounted for at least 65% of direct health care costs in 2010/11 and it would not surprise me if that number is typical across Canada. In the US that percentage might not be the same since the health care system is different.

The Steering Committee that set direction for this discussion was composed of government and researchers who chose stakeholders to participate in the discussion about issues and challenges involved in dealing with patients with multiple chronic conditions. They were picked because they could bring unique views and experiences to bear on the challenge and they could champion actions to address the problem creatively within their constituencies. (Michael Wilson, PhD)

The part that really caught my attention was the breakdown of participants involved in the stakeholder dialogue
3 Policy Makers
9 Managers
3 Providers
5 Researchers

One of the statements the participants produced stressed collaboration both within teams and also across silos with the emphasis that each silo brings unique value to the overall goal. The plan is to continue to support bottom up and person centered approaches to developing models of care and working across silos.

The patient silo is miles away

At this point I'm really wondering why the patient silo is off in this field miles away from the other silos. After all where does the money in the health system come from?  There is only one source - the taxpayers. Why are patients not considered valuable stakeholders? If we want to work across silos I think everyone needs to be considered and included.

As much as some health care professionals fear the intrusion of the engaged and educated patient, it seems that policy makers and planners are even more worried about patient inclusion in health care planning. (Apologies to the rheumatology researchers who are including patients)

Among the suggested strategies to accomplish improvement in the treatment of chronic disease is developing a patient centered approach to health care and using patient friendly language. There are now more patients eager to be engaged in their own care; that will help. One of the tools to deal with multiple chronic diseases will be self management. "Using innovative, collaborative approaches to developing and supporting use of self-management tools and resources" as well as including older adults and those with chronic health conditions in random trials are other methods of making progress in this area.

It was a very useful webinar that made perfect sense. But again we don't see patients included in policy and planning. I feel that this problem is perfectly illustrated by ePatient Dave's rallying cry "Nothing about us without us."

With patients seen as the lowest level in healthcare it sounds as though we are perfectly positioned for the new bottom-up strategy.

Learning to be Healthy

This article titled What Makes Canadians Healthy or Unhealthy contains an interesting discussion of why just spending more money on health care will not improve health in the general population. Many of our health problems are influenced by factors we can influence either alone or collectively as a society. 

There was an online article in the news lately talking about the Nurses Study. It stated that if you eat a good diet in your middle years you are more likely to "live long and prosper".  Here prosper means having no diseases that interfere with your work and enjoyment of life.

We have never been in a better position to find out what we need to know to stay healthy. My dad had a book of advice called "Dr. Chase's Recipes" which gave him advice on common illness. More than 100 years ago it was second only to the Bible in popularity, and sold over 4 million copies. We've come a long way since then, and we still have the same desire to know how to take care of ourselves. 

Doctor Chase from my Dad's own copy

You can find so much more accurate information now through online resources than you ever could from Dr Chase.  The internet is like a giant all-you-can-eat buffet. 

The hardest part is discovering which resources will do you the most good. In one sense it's like a first trip to Disney World where every attraction looks equally good. The truth is that they're not equal and planning the trip with a guidebook can help you hit the high points and maximize your time.

So who can you trust for your online research? Everyone says their own site is excellent.  Dr. Google gets more visits than anyone but beware - the loudest voices and top-ranked sites that come up are not always the most accurate.  On the plus side Google has changed the way it ranks sites so that credibility is more likely to be near the top of the ranking.

Knowing who and what to trust is a skill that can be  acquired, but it takes work and judgement to learn to do this. Lectures, webinars and other resources made available by credible and mainstream organizations and advocacy groups are often a good place to start you out on your search. 

Social Support is a plus 

It's when you begin to educate yourself that you need the most help to get on the right path. Here are some ideas:

Sign up for the Reaching Out with Arthritis Research (R.O.A.R.) webinar/seminar which is held in the fall every year in Vancouver Click here for past events and to hear patients, doctors, researchers and ethicists talk about the benefits and harms of using online technologies in health and healthcare.

If you have Sjogren's Syndrome you could attend the Annual Patient Conference. This year - the 10th Annual Conference - the line up of speakers was amazing. I have wanted to hear Dr Robert Fox speak for years. Now I'm looking forward to the On-line Webinar in 2017 on Oct 21. It's called Navigating an Immune System Gone Wild.

If you're starting to learn you'll find get reliable information. If you are already experienced you'll hear about the latest research. Involved patients have better outcomes!

Many pathways to knowledge