Chronic Diseases: More the Same Than Different

In September I wrote a guest post called "A Day In The Life" that appeared on HealthiVibe. Jeri Burtchell is doing a series of patient stories and has branched out to include chronic disease beyond her own. That's easier for me to understand now than it would have been a few years ago.

One thing I have noticed during tweet chats with patients is that people with ongoing health problems have a lot in common. Whether it is finding information, planning doctor visits, developing a website to help others, or just advocating for being included in decision making in healthcare, the disease doesn't matter as much as common issues about which we are passionate. Many topics that I instantly dismissed as not relevant to me have led to useful discussions and new friends.

In ovarian cancer, lung cancer, rare disease, diabetes or being a caregiver, I have found in all of these topics there are more similarities than differences. That may be part of the reason that the ePatients at Stanford Medicine X became a strong community so quickly, often greeting one another as if we were long lost friends rather than strangers.

Recently I came across a new issue that concerned me and where advocating passionately for myself in person had no effect on "the policy." When I was back in my natural habitat (in front of my computer) I realized the obvious - patients on social media are no longer alone. When I tweeted about my issue I found others across the country who felt the same and also agreed that we needed to work for change.  The issue is now an area of discussion with policy makers. We hope positive results will come from our meeting.

Including the patient voice in healthcare decision making can have impressive results, as I found out during the IDEO Design Challenge. Maybe it is time for a new sign.

Graphic by Lucien Engelen

Here are some links to Patients Included blog posts

One by Susannah Fox
And Leslie Kernisan

And I'll end with a quote from ePatient Dave speaking to a conference organizer: 

"I say this: want to know if you have Patients Included? Ask this: “Are there any actual sick people in the room?”

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.