One of the most significant side effects that may come with trying to become an Empowered Patient is analysis paralysis. You simply have so much information, from so many different sources — at times offering conflicting conclusions — and you have become frustrated, confused, scared and do not know which end is up.
Analysis paralysis is common in patients who are not used to looking for health care information online — and those who are not sure how to vet the information they have received. Unfortunately, well meaning family and friends may simply complicate the issue because we all have friends of a friend whose husband’s niece had the same problem :-)
This brings to the forefront two principles that I discuss often.
First… physicians and other healthcare providers need to be more engaged online and need to be creating more content. Right now the content available when you Google a certain topic is either commercially oriented, dated or possibly completely inaccurate. Google has completely changed around their algorithm to determine SEO. This is probably good for the consumer as it will drown out the influence of many of the content farms and websites that simply want you to click through page after page of meaningless information to drive their revenues.
Second… The true power of social media lies within the ability of your network of twitter, facebook and true friends to guide you and help you vet the websites and information available — and along the way point you to sites that the “crowd” feels has useful, accurate and meaningful information. Perhaps your network might even point you towards a health care professional who welcomes Participatory Medicine or Empowered patients.
If you find yourself completely consumed by the information you have reviewed and you have a 12 inch stack of papers sitting in front of you …
- Stand up
- Turn off your computer
- Leave the paperwork alone
- Do not go back to google … for now
- Go out and do something fun… or at least distracting.
- Wake up the next morning…
- Head to twitter and perhaps to the Health Care Hashtag Project by the Fox Group.
- Start searching and engaging with patients or practitioners and find some folks you are comfortable with.
- You will inevitably be pointed to info sources and probably a patient driven (disease specific) website where you will find many people like you with the same goal.
This approach should allow you to drown out the noise, download actionable, meaningful content which you can digest … and improve your understanding of the disease you suffer from. After you have digested the information, you will have many questions…. now bring them with you to your Participatory Medicine proficient physician and review them together as a team.
End of analysis paralysis… I hope.
Disclaimer: this information is for your education and should not be considered medical advice regarding diagnosis or treatment recommendations. Some links on this page may be affiliate links. Read the full disclaimer.
Your article is Right On…Having RA, I found myself overwhelmed with information, but also hungry for it. As an empowered patient I have discovered one must discern from accurate and inaccurate information and the web has misinformation abound ! Physicians and Rheum Docs were pressed for time and did not offer anything more than the most basic of information. One of the most important things that helped me educate myself regarding my disease was just time and don’t believe everything you read. A patient can only stuff so much information in at once and they cannot expect all the answers to come from their practitioner in the first visit! But like Dr. Luks mentioned, patients need more content. Practical, accurate informational online content, with links to more detailed information for those who want to dig a little deeper. In my experience, as a patient with multiple chronic diseases, it is the not knowing that is sometimes worse than the disease itself! Thank you Dr. Luks for your blog post….
Thanks Susan…
Great suggestions!
One of the difficulties newly diagnosed cancer patients face is the reality of absorbing complex medical information at a time when their stress factor is very high. For other life-altering decisions — marriage, jobs, moves, etc — we usually have time in which to decide.
A suggestion I offer: approach the diagnosis/information as a journalist might. Years ago there was a model of the “5 w’s and an ‘h” — which is easy to remember. Ask these questions: who, what, where, when, why and how.
An area where I think physicians like you help enormously is in guiding patients in weighing information. The more we can continued to education people on a preventative basis, the easier the discussion can go (theoretically,anyway) when a health care decision needs to be made.
Thanks for posting this. It’s an important conversation,
Jody
Thanks for the comments Jody
Hi Howard,
I have just started following you on Twitter. I am in the UK and have a long term chronic kidney disease, inherited and incurable. I also chair the patient charity and manage the web, email, phone, Facebook, twitter comms.
When first diagnosed in 1981, I went immediately to medical reference books and quickly learnt there was little I could do. I continued to use scientific/medical sources for years to check on disease and therapy progress, and started searching online in 1991. I interpreted what I read without physician involvement, and became an expert patient. Nonetheless, my disease has sometimes thrown me a googly, as we say here. But I have never felt the need to share or discuss my experiences with others with the disease.
However, since being involved with the charity, I have seen how beneficial e-sharing is to some people: whether by email group, bulletin board, forum, Facebook, twitter. But what surprises me is how little attention is paid by professionals to the stories and experiences of patients on these platforms and channels. Patients express their frustration at lack of information, unempathic short consultations etc and reveal intimate details of their condition to strangers online they wld never share elsewhere. There is fantastic levels of trust in online patient groups.
How best therefore to harness all these positive elements?
I really like your comment. Unempathic short consultations that don’t answer patients’ queries nor prepare them for the long period between consultations…Initiatives like PatientsOpinion help collect and harness patient suggestions.
Howard, thanks for the great post. Early adopters in the realm of #hcsm will have to lead us; and by “us” I mean the second wave of medical adopters, so that we can be as influential and appropriate in disseminating the information to the next generation of medical professionals.
Thanks Ryan… Docs like u are the reason why us *early adopters* stay active on #hcsm, etc. Great job.
Howard
Great article and a must read. Congratulations! Patients do qluckiy disseminate what’s valid vs. what’s harmful or wrong/irrelevant. Social Media is a great help in healthcare, for patients at least. I hope to see more medical professionals using it as a good education and patient support tool.
Thank you… medical decision making, health care literacy etc are all such important issues, not unlike shared decision making, etc. It’s all part of the communications equation — an absolute “must-have” if physicians are going to play an active role as a team member in a patient centric, patient friendly environment.
Howard Luks