Why are you here?

Dr. Eric Topol addresses E-health Opening session in Ottawa

Why would you invite a patient or member of the public to a major conference on health information technology (IT)?

Obvious though that answer may be to patient advocates – “nothing about me without me” – it is a question that merits some consideration.

In the not too distant past – say before 2010 – health IT conferences shared the same characteristics as major conferences in any medical specialty. Clinicians, people trying to sell things to clinicians, academics, health care managers and specialized media came together to discuss new research on what would help patients best. Patients sometimes atttended but usually as “Patient with ‘x’ condition” and a useful prop for someone’s research.

As the e-patient movement gained steam, it became clear health IT conference organizers had to at least play lip service to involving patients more. You could do this most easily by inviting an iconic figure such as e-Patient Dave or Regina (‘The Walking Gallery’) Holliday to address your meeting.

But organizers quickly learned that such individuals weren’t prepared to be just tokens. Having been invited in, these and other dedicated patient advocates have changed the very nature of health care debate.

The E-health conference which just wound up its first day of proceedings in Ottawa will have its own patient hero  – double-lung transplant patient Hélène Campbell-  addressing a plenary on the consumerization of e-health tomorrow.

But beyond that what should the E-health organizers be doing?

Inviting patients to oft-arcane discussions of electronic medical record interoperability, SNOMED, or data analytics featuring some truly mind-boggling charts may be the right – albeit cruel thing to do, but who gains from it?

And if you are going to invite a Patient, are you inviting them in their own right or as a spokesperson for a disease advocacy group or a regional constituency? And are you going to pay for their attendance or have them pay their own way?

Obviously patients are a major stakeholder in e-health and must have a voice when major decisions on strategic planning about e-health are taking place. But absent politicians – who are supposed to speak for the people – it is difficult to define who has the authority or right to speak for the patient community on this issue. And if a patient does attend who are they reporting back to and why?

This is not a challenge that is unique to e-health but is true of all general policy discussions concerning health care and the health care system.

Listening to futurist physician Dr. Eric Topol in the plenary presentation to E-health this morning, it is clear that if the democratization of medicine is truly here then we need to find a way to meaningfully involve the public in conferences that have traditionally been the domain of academics, health care providers and vendors.

Maybe e-patients are a legitimate new category of conference delegate at conferences about EMRs, just as they have become in social media conferences. But surely it’s a waste of time and effort unless the information they gain from the presentations and networking translate to informed decision-making in frameworks that actually allow them a voice.

There’s a here, here

 

This morning I did two things that reaffirmed to me  the value of social media.

As a professional communicator in health I’m sure I’m not alone in wondering whether all the time spent on Twitter or using other social media tools is just a narcassistic exercise involving a self-referential and closed community divorced from the real world.

These moments of doubt arise whenever I contemplate the large number of colleagues, physicians and others working in the health care field who dismiss social media as a time-wasting distraction that does nothing to further the interests of providers, patients or the system at large.

As a regular if not fanatical Twitter user (cue hungry baby crying in background, wife pulling at pant legs bemoaning empty pantry), these moments rarely last long.

This morning while Canadians prepared to celebrate Queen Victoria’s birthday by opening the cottage and consuming large quantities of adult beverages, Twitter quickly yielded at least two pieces of what I would call information and knowledge respectively – both of which I would argue further my work and health care communications in general. Unexceptional in themselves, they show how Twitter reaffirms its value to me professionally over and over.

First, I saw a tweet from Dr. Kevin Campbell (@drkevincampbell), a North Carolina cardiologist and media commentator referencing a new mobile app to help patients prepare for a colonoscopy by sending them timed alerts for each step. Further examination showed the link to be to a news story from Digestive Disease Week, the foremost North American conference dealing with gastrointestinal issues.

Having written about GI issues for several years, I had already been following DDW via @DDW13 and especially tweets from two savvy physician commentators Dr. Alan Coss (@alcoss) from Ireland and Dr. Ryan Madanick from Chapel Hill, NC (@ryanmadanickMD) who are both in attendance at the meeting. However I had failed to follow up on an earlier reference to the app developed in Arizona.

Seeing, Kevin Campbell’s tweet I was able to learn more about the app and also retweet it to my followers.

The second thing I dd was read a blog by an Australian woman Michelle who is dealing with the serious issues accompanying a chronic disease.

I had already exchanged comments with Michelle (@rustyhoe) the previous night during the U.S. based #hcsm chat but this morning I was prompted to read her latest blog post  “Fear and Loathing in Las Loungeroom” http://bobisdysautonomia.blogspot.ca/

Michelle wrote: “Living with illness is a crazy ride, filled with complex emotions and situations. We face challenges to our sense of self, our relationships, our entire way of living. There are highs and lows and even the most positive people can find themselves dealing with sadness, fear, guilt and other negative emotions at times. Pretending those times don’t exist or minimising another’s experience does a disservice to ourselves and to our fellow patients.

Shame and fear thrive in silence. And that’s one burden we can change.”

The post, like many others informed individuals able to write about their health challenges in a compelling and informed way, provides me with insights I am just not going to get anywhere else.

Here endeth the lesson.

(Yet another) blog is born

Does the world need more blogs – probably not, but it’s getting one anyway.

Days of Past Futures is being launched to provide a more of a subjective voice on issues that I observe and cover in a more journalistic manner in other venues and formats.

The interface between the Canadian health care system, health information technology and social media is a complex one that is fundamentally changing how we communicate about medicine and health care.

The title ‘Days of Past Futures’ is – of course – a nod to the famous Moody Blues album from 1967. Over the last few decades we have seen a number of bright, shiny futures espoused for the Canadian health care system as a result of reforms and innovations such as the advert of electronic medical records. Few, if any, of the promises attached to these innovations have come about. Hence the blog title.

Through this blog I intend to provide a more narrative perspective on the issues I see through my lens as a communicator for the Canadian Medical Association (CMA). While I am sure my perspective will often align with those of my employer it should be stressed that the views expressed here are my own. The CMA has its elected president to express the views of its membership.