Saturday, 2 November 2013

Patient's Role in Healthcare

I participated in a tweetchat a few weeks ago about an upcoming 2-day conference that occurred in October. It was called the "Second Summit for Sustainable Health and Healthcare" and put on by the Conference Board of Canada.

As the chat went on I looked up the meeting agenda and saw no patients included; however today when I checked again to confirm my impression there was one! Dr. Sholom Glouberman, the President of Patients Canada, was the moderator of a panel called "From Beginning To End - Patient Centered Care". He certainly has credibility with patients after his years with the organization now called Patients Canada. 
From PatientsCanada #conf2013

The topic of sustainable health and healthcare ought to be deeply interesting to anyone who is ever a patient. Not only is everybody in need of care at some points of their lives, we are also the source of the funding.  Patients are the major stakeholders in healthcare.

Most of the people at conferences are in the healthcare field or involved in a health-related business. They are not penalized by loss of income when they attend job-related events. 

It is difficult for patients who are not affiliated with health organizations to pay high registration fees, and to take time off work to attend, yet I believe it is important to include them in conferences in ways that are affordable. 

Here's a link to a terrific post by Leslie Kernisan, MD Patients Not Included where she talks about patient inclusion and the MedX experience. She makes her points so well.

There are ways to help include patients to attend health events -- such as scholarships as offered by Stanford MedX, or Mayo Transform. Reduced admission fees or free admission as offered by some European conferences would also help patients to stay informed and engaged.

In social media we see a lot of discussion about the move to include patients in conferences and change initiatives.  As Paul Gallant of HealthWorksBCsaid during #cbochealth chat “Our health system is profoundly undemocratic. That needs to change.”

We need informed and health-literate consumers to be involved in healthcare to help to make it sustainable. 

I agree with Lucien Engelen when he says leaving patients out is just like people at your work having a big meeting about you...without you.

The movement to include patients as stakeholder partners is more evident in Europe and the US than in Canada.

Patient engagement is said to be the Holy Grail of healthcare – the equivalent of a blockbuster drug. Highly-engaged well-informed patients cost the healthcare system less money and tend to influence other patients towards better health.

Patients want to share, collaborate and co-operate. They want to transfer the knowledge they have gained through years of coping with health problems.

Patients need to be involved.  Doctor’s visits take at most two hours a year in total for people of moderate health. The rest of the time we are on our own. Self management is becoming essential to keep the focus on health, not treatment, especially in chronic disease.

Things work more smoothly and economically when patients know more and understand the system .

Also, patient involvement can trigger ‘aha moments’ for HCPs (Health Care Practitioners)

Changes in paternalistic attitudes may help to change patient behaviours and to empower and activate patients to spread what they learn rapidly and effectively, often 
through social media.

Patients are good at helping others cope with the small stuff in health care.  I wrote a post giving tips about injecting biologic drugs last March. It had more than 1,000 hits in one week alone. People value that form of narrative information. 

What do we do to increase the number of active patients? That's a question needs an effective answer.


  1. Harmed patients are often overlooked or unfairly disqualified as 'biased'. Their participation can prevent further errors and heal by validation.

    1. On the presentations of the Canadian Patient Safety Institute for their virtual conference this week (#asklistentalk) there were powerful stories of patients who had suffered adverse events. Some were ignored for a long time, one was ostracized.
      One mom of a high school athlete who died when an AED was not used to restore his heart rhythym. The same day I heard her there was a success story on the news about the successful use of an AED in a school. She has campaigned tirelessly for the use of defibrillators and had without a doubt saved lives.
      She suggests AED drills in the schools because seconds count in these cases.

  2. Improvement must be needed everywhere, Annette. In past years, we've used Canada as a good example here in the U.S. where in rheumatology research, patient involvement is nil. I'm sorry to hear it's not better there.

    I don't think people realize that patients who function as consultants or advisors (to Mayo Clinic for example) often not only do not get paid for their time, but also pay for their own travel in order to participate. We have a long way to go.

    Good post!

    Much more to share on that soon, having just finished a week that actually took 6 months of my life (American College of Rheumatology scientific meeting). We patient advocates do it all - usually with no staff or no salary - and competing with large well-funded companies for space on Google & in meetings. And we make things happen anyway! Go patients!

    1. Actually arthritis is a brighter spot here. I am on a committee myself for the Ontario Rheumatology Association, and my friend is on the Council Advisory Committee for the Ontario Best Practises Research Initiative as well as St. Mike's mobility research unit which is comparing difficulties faced by arthritis patients working, returning to work or attempting to find work.
      They do have patients at the Canadian Rheumatology Association Conference, though I heard that they sit at a table in the corner. That's something to work on.
      There are also other patients I know who are involved in research.

      There was a conference in Alberta where ePatient Dave spoke - they imported him, so I'm sure he had some influence there.

      Money has to be an issue for patients attending conferences. I am not sure how the funding worked but we had patients from every province at Patients Canada.

      I'm really looking forward to hearing what you learned at the conference. I liked the comment that going to a conference using Twitter was like the difference between driving a Mini and a Ferrari, made by Dr Rebecca Grainger.

      Generally though (to my knowledge) there aren't very many patients at conferences. There was a Patient Experience Conference here that originally had no patients. #hcsmca members had a lot to say about that.

  3. Thank you for this thoughtful post, Annette. I have been in touch with the President of the Canadian Rheumatology Ultrasound Society to offer my interest in participating with committee work, curricula, advocacy etc... There is SOOO much work to be done in Canada and it feels like the landscape is pretty desolate with the type of professional / patient advocacy I envision. I'd be interested in talking with you more about upcoming opportunities and what we might might possibly accomplish together.

  4. That would be great Helen. I do see some patient involvement in Canada. I'm working in that direction too. As Kelly said in the chat today it's taken her 8 years to get to this point. There seems to be an active arthritis community in BC, so that's a good sign