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).
— Niam Yaraghi (@niamyaraghi) June 17, 2015
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 basis. The 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:
T1) If biomarker predicts benefit but not req’d, would you test & use it to decide to do immunoRx or just favor immunoRx w/o test? #LCSM
— H. Jack West, MD (@JackWestMD) June 5, 2015
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:
#lcsm T1 similar to Her2 Neu in Breast cancer treatment patient should be Her2 Positive
— Dr. Ehab Mohammed MD (@ehabesmat) June 5, 2015
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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