Patients and the Power of Online Communities – Get on the Train

I have been formulating this post in my head for some time, not quite having crystallized what I wanted to say.  Yesterday, that changed.  Sally James sent me a piece that she had written for the Health News Review, “When patients speak – some hear golden tones and others noise.”  It made me think.

The essence of the piece is, as Sally wrote, “how and where and when to register patient feedback in health care.”  It is a sub-component of what has been brewing in my head for some time:

  • How and when do we know that the value of online has resonated and has demonstrated impact within the medical community?
  • How does social media help connect patients with each other, caregivers, doctors and researchers?
  • Is it fair game to rate your doctor on a consumer opinion web site like Yelp?
  • What is the legitimate impact of online in the healthcare world?

Online matters: becoming your own healthcare advocate

I commented on Sally’s piece yesterday (again, my personal opinion – my standard disclaimer is at the bottom of this post and even has its own, shiny page) that in the Internet of Things era, those who use it wisely can become much more educated consumers and patients.  We can connect with others via social media and web sites and participate in these meaningful online communities, joining others that are impacted by the same illnesses.

We can gather information, get support and even research clinical trials that are sometimes still woefully undiscovered.  This enables us to ask in-depth questions and also better understand treatment options – in short, we can become more informed consumers.  Does this make us doctors?  No.  Can this outcome be measured?  Probably not.  But healthcare decisions are among the most important choices we make in our lives or on behalf of others, so why not be as informed as possible?

The debate: is online fair to doctors?

I was surprised to see that there is controversy surrounding patients reviewing the care that they receive from their doctors, mainly about those who comment on Yelp.  This prompted an Internet dust-up between Niam Yaraghi of the Center for Technology Innovation at the Brookings Institution and Casey Quinlan of Mighty Casey Media (more on their backgrounds in Sally’s piece).

Side note: these two also got together in a Google Hangout that is archived on YouTube, “Patient Reviews of Physicians: The Wisdom of the Crowd?

Again, I think in simple terms (I am a not a doctor,  I am a communicator who uses social media:  I literally wrote the book), but I am often exposed to scientists and healthcare professionals who get caught up in the Big Data Trap – one has to have hard core, unassailable data to prove a point in medicine and healthcare, particularly when it comes to online information and patient communities. I have been involved in online since 1997, and I can tell you that on many occasions, I have seen that online (particularly Twitter) can have a meaningful impact that is often dismissed for lack of scientific rigor.

Online matters – and there is data

Early adopters/advocates like Janet Freeman-Daly of the #LCSM (Lung Cancer Social Media) Twitter communities have done pioneering work in gathering cancer patients together, connected via one hashtag, to support each other, share resources and information, and even chat via Twitter on a bi-weekly basisThe Healthcare Hashtag Project and those behind it have done groundbreaking work at standardizing the use of hashtags in disease-specific communities, demonstrating the impact of Twitter to unite patient communities.  So when you create a virtual community where patients, caregivers or doctors can connect, ensure that they all gather in the right place and are discussing the same topic (the hashtag), amazing things can happen.

A turning point for me (and an aforementioned amazing moment) that demonstrated how Twitter does indeed matter to doctors (in this case, oncologists) took place recently during an #LCSM chat led by Dr. H. Jack West.  The chat was about lung cancer and immunotherapy, but what really caught my attention was that the topics discussed during the chat were fairly technical and scientific:

I followed the chat as did many others, but what amazed me was that I saw oncologists talking to oncologists, and this gave me hope (and a possible proof point) that scientists and doctors are increasingly seeing the value of using social media to communicate with patients and each other:

Online matters: another proof point

Physicians/social media thought leaders like Dr. Matthew Katz are doing incredible work to quantify the impact of Twitter communities formed around particular diseases and in one particular study, cancer.  Dr. Katz recently presented a poster the American Society of Clinical Oncology’s (ASCO’s) annual meeting entitled: “Disease Specific Hashtags for Online Communications About Cancer Care.”  I was not at ASCO, but I certainly saw this poster’s impact – on Twitter.  It was one of the first truly comprehensive efforts I have seen to prove the point that online patient communities matter.

What this all means to me

Within the last few weeks, I have seen much-needed proof points that online truly matters to healthcare, particularly in the cancer community.  I’ve seen that consumer review web sites can serve as a way to gather information about healthcare providers (and rile up some folks too).  I have seen new frontiers of vibrant, online communities that began with patients talking to patients and now include active discussions among  prominent physicians.

And finally, I have seen an amazing statistics-based analysis of cancer-specific hashtags presented at one of the most prestigious cancer meetings in the world.

In short? Yeah, online matters.  And the train has left the station.

The views expressed in this post are mine and mine alone and do not reflect those of the National Cancer Institute nor Kelly Government Services.  Sigh.

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  1. Mark Story Says: July 3, 2015 at 8:55 am

    Test comment.

  2. Good read. Thanks for highlighting the great work #LCSM has done for the online community. It’s been a labor of love. Having been a part of this movement (indirectly), I would agree that being online does matter. Significantly. But, we have to take the good with the bad, unfortunately. There is as much bad info out there as good info and many aren’t yet savvy enough to distinguish between the two when it comes to healthcare information. The next step now is to teach others how to find valuable information among the noise. It takes a LOT of time and research to know and understand healthcare issues…similar to the research one might undertake when searching for a house. Not trying to diminish the seriousness of health, but simply saying that it takes time and dedication and multiple sources (and resources). I find it fascinating to follow HCPs and others who have training in the science fields. Were it not for Twitter, I would not know anything about some of the healthcare issues we face today. As with many who are involved in healthcare conversations online, I became engrossed because of my mom who had lung cancer and eventually died from that awful disease. What could we have done differently? It drives me every day. You seek to know more and to understand and I’m glad that online options exist. I tell everyone that they HAVE to be their own advocate, no excuses any more.

  3. Matthew Katz Says: July 12, 2015 at 4:08 am

    Great post, Mark. The train has left the station, but it’s up to us to help navigate where we’re going. Social media are powerful communications tools. I see great potential for good but we should figure out some safety rules on how to do it well, for the benefit of patients, doctors and everyone who cares about health.

    The whole MD ratings controversy is a good example. There is great potential value in ratings, but only when the measures are validated and the sample size is large. I’m not sure that we’ve gotten to that point in healthcare, so caveat lector – there is selection bias in who completes ratings and may not be representative.

    The emerging patient communities are amazing; my hope is that many of them become sustainable. The challenges in any community are (a) coming up with rules and civility that work (b) balancing need for leadership with inclusion and ability to mentor new leaders. I’m not sure that my hashtag idea will work unless these issues are addressed. I have an idea on how to do it but limited resources to complete it. But someone will, and hopefully that will make it easier for patients to learn more online about health safely and effectively.

    • Mark Story Says: July 12, 2015 at 6:16 am

      Thanks for commenting, Matt.

      My personal belief is that not only will many of the patient communities become stable, but we cannot begin to envision the ways in the future in which they will communicate, collaborate and coalesce. There are technologies that have not yet been invented that will, in 5-10 years, make it even easier to extend the powerful and meaningful reach of these communities – and help both patients and researchers. People laughed when Bill Gates said one’s refrigerator will one day have a computer in it.

      And as for the resource issue, my dream job would be to (somehow) volunteer as the Organizer of the Cancer Advocacy Tribes, the person who brings together the different cancer support communities to a) build a lasting and open pipeline of information and best practices sharing, b) to stop squabbles because ultimately we all want the same thing, c) to focus less on “awareness” because that is such a undefinable term for a cause that needs laser-like focus, and d) to ensure that when it comes to really important issues like medical research funding, people understand that a rising tide can increasingly lift all boats. With projects like the Cancer Genome Atlas, the fact that X community gets X percentage of the research funding is becoming less and less relevant. NCI-MATCH, as you know, will now classify solid tumors on a genetic basis, NOT on the types of cancer that the patient has. This continues to make me believe that the path forward (perhaps past my lifetime) will be diagnosis and treating cancer on the genetic level.

      Just my layman’s two cents (steps off soapbox).

      Thanks again for commenting.

  4. […] a veteran of the “does online work for organizations?” wars since 1997 and someone with a personal interest in patient communities, I can tell you that some in the oncology world still think that Twitter is something that only […]

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