“Years before my heart attack, I freelanced for a hospital that created a note pad with the saying “Thank you for being a ‘patient’ patient.” At the time, I thought it was cute. Now, I realize it isn’t funny! Continuous improvement should be the shared goal in healthcare.” ~Katherine Leon
A Look At Patients Included
#PatientsIncluded is 
a logo and self-certification co-created by Lucien Engelen and several others.* Through Google+ and Twitter debates, the group created a list of “charter clauses” which–if implemented–will allow conferences to self-certify as Patients Included, use the Patients Included logo and advertise as such. The five clauses include patient or caregiver participation in the design and planning of the event; participation in its delivery, actual presence of patients in the audience; travel and expenses of patients participants paid in full, with scholarships for patient delegates; all sessions open to patient delegates; and free virtual participation available through online streaming video.
In June 2011 Denise Silber’s company Basil Strategies held the first Doctors 2.0 and You. Described as an International “conference examining how doctors use social media and Web 2.0 tools to connect with patients, colleagues, pharmaceutical companies, payers and hospitals” it is one of the first conferences to include patients.
A Paradigm Shift
Pharmaceutical, hospital, medical, nursing and other healthcare conferences are usually created for healthcare professionals. Patients have not been able to afford to go to them nor have they been allowed to cross the membership or professional barriers to attend these meetings.
Yet patients are raising their voices to have open access, not only to medical journals, but also to the conferences where research is presented. This is a major shift that has been led by people who follow the call of Howard Beale in the movie Network: “I’m as mad as hell and I’m not going to take it anymore.”
Unfortunately, coming from this emotional place can backfire–as one physician attending Stanford MedX noted. “Sometimes this atmosphere makes conversations difficult. I fear that the pressure to be ‘politically correct’ might prevent honest discussions about the barriers to delivering the desired kind of care.”
So who is the “patient” of Patients Included? What is the purpose of including patients at healthcare conferences?
Who Is The Patient?
The answer seems obvious, yet there is some debate. For example, Amanda Greene feels that, “A patient is someone who has a health concern, chronic or not. A patient advocate is someone who speaks up for patient concerns.”
But if “we are all patients,” it is very easy to implement Patients Included. Even the professionals who already go to the conferences can be the patients and self- certify.
Some argue that a patient is a person living with a chronic condition, not just someone who sees a physician for a sore throat. Dave de Bronkhart, who is a conference speaker making a living at being the “e-patient,” remembers that he is not a “chronic patient.”
“People need to remember that although I advocate FOR listening to patients, I myself am only one – and I was only sick for six months. Every time there’s a patient panel, the audience experience broadens and improves – but I should never be the sole patient voice.”
However, de Bronkhart doesn’t decline speaking engagements just because he is the only patient.
Carolyn Thomas makes a distinction between the acute and chronic patient.
“I like to define acute care in this way: you get sick, you get treated, you get better—and then you thank your brilliant doctor.
But it’s only when you’re diagnosed with chronic illness—that …you learn what actually being a patient is all about. In fact, many people living with chronic illness feel terrible. Every. Single. Day. ..in chronic care we often live with the chilling reality that it feels terrible now, and it’s likely to get even worse over time.”
Purpose of Patient Participation
“Nothing About Us Without Us”
“Nothing About Us Without Us” is the motto of the Disabled Peoples International. The organization was created in 1981 in response to the Rehabilitation International Conference in Winnipeg where only 200 people with disabilities were allowed in a meeting of 5000 conference members, and they had no voice in the conference. This is the motto that many supporting patient participation in healthcare conferences use.
Gia Sison, patient and physician states, “Patient participation in healthcare conferences [is] needed for them to be heard and likewise to learn more about their condition. In the healthcare dimension, patient voices MATTER, it leads us, we learn from each other [in my opinion] IMO as a physician.”
However there are naysayers. David Grainger points out that
“Just because the inherent bias of patients (in believing that the condition(s) they suffer from is underserved, and most deserving of any available additional resources to improve that situation) is both huge and entirely understandable, does not make it a useful component of the decision-making process.”
His point is that the bias of patients toward their own condition, especially if it is rare, can influence the direction of research and funding, taking away from conditions that affect far more people.
Yet rare conditions may not be so rare. Witness Katherine’s work: In her research on Spontaneous Coronary Artery Dissection (SCAD) and her attendance at a Mayo Clinic conference, she was able to initiate a research agenda. In so doing, the research seems to be disproving the rarity of her condition.
Do Patients Understand the Content of Healthcare Conferences?
Organizations like the National Breast Cancer Coalition (NBCC) are training patients to attend conferences. Their program called Project Lead trains participants in the science of breast cancer. “The courses prepare graduates to engage in the wide range of local and national forums where breast cancer decisions are made.” Among other activities their graduates “Partner with scientists to design breast cancer research…Become involved with clinical trials on protocol committees, DSMB’s, helping educate the public about participating in trials.”
Katherine agrees that understanding the content of a conference is an excuse. “The whole idea that patients are stupid is half the hurdle. Just because you are sick, doesn’t mean you aren’t intelligent or your brain doesn’t function!…I can Google, read professional journals, and ask questions of the experts.”
The Welcome Mat or Thrown Tomatoes
After attending a conference on diabetes and depression, Scott Strange reacted to this statement by a provider,”At events like these, patients are a distraction when HCPs want data first, implications second. It’s for the best, trust me.” Scott wondered if “these events…have a cultural bias against patients presenting, viewing them as simply a “bitchfest” in front of an audience.”
He asked these questions,
“Does that preconception exist in the medical community? Is that sentiment common among HCPs? Are these stories of things that patients, that people have gone through, endured, survived simply viewed as, “woe is me, look at what these bad people did to me?” How many professionals actually look at these stories as something to learn from?”
A comment by a physician in response to Scott’s post provides at least one answer,
“If docs (I guess we qualify as HCPs) have the least bit of interest in patient stories, we’re hearing them in our offices 5 days a week. That’s not why we go to conferences.”
Why Do Healthcare Providers Attend Conferences?
There are many reasons. Continuing medical education opportunities are one key reason to attend conferences. Going to a new place and seeing the sights may be another reason. Presenting papers and research could be a third reason. Or perhaps healthcare providers go to conferences to forget about their work. Many providers tell stories of trying to go to their kids’ soccer games and being asked for advice about health issues from other parents. People who know they are in healthcare approach them in the grocery store with complaints. Maybe conferences are places where they are less likely to have that experience.
What’s Next?
The answer is unknown. Do healthcare conferences have to include patients? No. Is it important for the conferences to be open to patients? Patient advocates say Yes.
Perhaps the real question is how can patient involvement at healthcare conferences be understood as valuable to healthcare providers?
Value may come from relationship building. Katherine feels her role is “Give respect and gain respect on behalf of my fellow patients…” She believes that “real participation” [by patients at conferences] means doing your homework and not wasting peoples’ time. [It’s]important to contribute, not self-promote.”
Attending conferences with Patients Included can help. Doctors 2.0 and You is held June 4th and 5th in Paris. Stanford MedicineX occurs September 23 and 24 in California.
Content from #HCHLITSS Tweetchat May 14, 2015 and email correspondence with Katherine K. Leon May 20, 2015
*Kathi Apostalidis, Shirley Ayres, “e-Patient Dave,” Mike Clark, Michi Endemann, Ceinwen Giles, Jonathon Hope, Valentina Jaramillo, Isabel Jordan, Annette McKinnon, Harris Lygidakis,John Mack, L. Macnaughtan, Casey Quinlan, Tessa Richards, Sara Riggare, Sara Shear, Andrew Spong, Len Starnes, Graham Steel, Kimberly Strain, Miguel Tovar, Paul Wicks and Colleen Young
Doctors should give us a little more credit! I believe we, as patients, would welcome honest discussion, and we are certainly capable of rational thought. Our chronic illnesses have not robbed us all of that! I have researched my condition since the day I was diagnosed, and I believe other patients and I could benefit from attending many of these conferences. Further, I believe physicians, pharmaceutical representatives, and others in the medical field could benefit from patient attendance at such events. We want to learn. We want to be included in all aspects of our care. We have a right to be included. We should demand it!
As a patient and a Food Allergy mom/blogger/etc I have attended health conferences and YES, it IS important! Part of what’s going on within our health system does truly link back to not being able to identify with patients as a person rather than a number or a range. One of the reasons that many conferences like having non-medical attendees is to hear other concerns that they don’t know how to correct.
Good article. I guess that the cardiology, electrophysiology, and cardiothoracic surgery doctors are ahead of the pack as they have been inviting me, an atrial fibrillation patient, to speak at their conferences for the past 6 years. I’ve spoken at many of the biggest cardiovascular-related medical conferences in the world. And I also bring other patients with me to those medical conferences in order to learn and participate. We patient organizations also have a big presence in the exhibit hall. And while we’re talking about clinicians, I had the privilege (to the best of my knowledge) of being the first non-clinician involved in the 2014 AHA/ACC/HRS Guidelines for the Management of the Patient with Atrial Fibrillation.
In addition, my organization, StopAfib.org, brings the top physician speakers at medical conferences to speak to patients at our Get in Rhythm, Stay in Rhythm Atrial Fibrillation Patient Conference (http://www.getinrhythm.com). Our belief is that we need to bring doctors and patients together to communicate more effectively and to together find solutions to patients’ medical concerns.
Mellanie True Hills
Patient/patient family participation is vital because our experiences can challenge the system’s comfortable ways of dismissing or ignoring failure. Health care executives can play with spreadsheets and flow charts and hold endless meetings about facility operations, but they never come in contact with patients to understand how it works, where the problems are. And usually staff are afraid to complain. In my province people don’t like to hear about fearful staff – and that includes the doctors – but it’s a reality that continues to negatively impact patient care.
For the avoidance of doubt: Stanford MedX is not a Patients Included event, and has chosen to distance itself from the PI movement.
Also, the Patients Included charter is currently (February 2016) being expanded to allow peer-review journals to self-certify for Patients Included status. This is the first of a number of planned yearly iterations which will eventually incorporate RCTs, continuing professional development for doctors, and more.
See the #PatientsIncluded hashtag on Twitter for more details, and patientsincluded.org from 1 April 2016 for the new Patients Included for Journals charter details.
Hi Andrew,
Thank you for the clarifications. Your work in this endeavor has been invaluable. Kathleen
I have attended medical conferences (cardiology and electrophysiology) with Andrew Spong and Mellanie True Hills for several years. My purpose: take the presented information back to patients for an informed/shared discussion with their clinicians. If the ACC data is true (take 7-16 years for new research to read every day clinical practice), those of us living with disease need the new info as soon as possible to improve quality of life.
As I am exclusively on Twitter and do not editorialize, I have also gained clinician, researcher and journal followers for those who cannot attend.
Thank you so much for doing this important work! This is what patient-centered efforts can achieve. Kathleen
As a type 1 diabetic I attend medical conferences because I want information to help me make informed decisions and/or improve my quality of life. Knowledge is power as they say. I certainly don’t attend with the aim of “sharing my story”, although the patient voice could be of benefit if the organisers have a genuine desire to widen the healthcare dialogue.