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. 

heritage-history.com

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.

Participation in Health Goals

Participatory medicine and best outcomes for patients were part of a Twitter conversation about health goals at the Stanford MedX Conference (#MedX). I collected this series of tweets and put it into a storify called Goals Tweets From MedX. 
Seeing this series of Tweets made me think. We never stop working on personal goals, but I hadn't thought about health goals beyond the generic "better health".  Nor have I asked my doctor what he thinks I could achieve.  I imagine we have similar treatment goals but sharing them might help both of us proceed more effectively.

                                           It's a beat up DeSoto

I wonder if my doctor thinks of me as a beat up old car that he is trying to keep on the road, or if he sees more hope than that. It must be easy for health care professionals to generalize in this area because deep down there are many similarities in what patients want.

Here is a paper about Shared Decision Making tweeted by @EmpoweringPts which even shows a form which can be used to make collaborating on health goals with your doctor easier.   

Managing goals can help patients to deal with depression and anxiety symptoms according to this paper titled A Goal Management Intervention for Polyarthritis Patients.  The authors say emotional well-being is a key factor in prognosis, i.e. how well you will do in the future. You need more than just the absence of psychological distress to do well.  These are the three factors that affect emotional well-being the most: "positive affect, purpose in life and social participation" You can read the full paper at the link. 
       
I was very impressed by this comment made by @AmyCueva at Stanford MedX when she said that emotional intensity signals an unmet need. That is easy for patients to believe. She continues “You must pay attention to pain, frustration, and anger. Our responses to the many authentic, emotional voices we hear are testament to the critical importance of the story".

                                Emotional Intensity from www.womens9.com

Another interesting development that I don't know much about yet is from Britt Johnson who tweets as HurtBlogger. She and Creaky Joints have developed a goals app for chronic patients called The Goal Machine. The focus of current apps on self measure data may not satisfy us as chronic patients so the new app attempts to address that.

Denise Silber‏@health20Paris29 Sep

Wonderful human perspective from @hurtblogger about #quantifiedself - how to apply to individualized goals of patients, not athletes #medx

@HurtBlogger chronic patients have different goals: bathing, walking up stairs, cooking dinner, going to work, exercising, medication compliance #MedX 

I look forward to hearing more and have added the link to Creaky Joints above.