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Can You Trust Advice from Other Patients?

When we have a problem, we often ask friends and family for advice. How to fix a leak under the sink? How to get a baby to sleep? And we use Yelp and Google to read reviews on places to eat and hotels to stay in. But where should we find information and support around a medical condition? Yes, we can, and should, get information from our doctors. But doctors are rushed and likely have not had personal experience with your condition. Should we get advice from friends and family members? Can we trust advice from other patients? Peer health advice, the sharing of health stories and information from other patients, is a great way to get information and support from those who have been in your shoes.

What is peer health advice?

5 people sitting on sofa chattingPeer health advice, also referred to as peer-to-peer healthcare, involves learning from people who have personal experience with similar health conditions. This includes connecting in-person, online, by texting or on the phone. And the advice is free, from non-paid people with an interest in helping others by sharing their experiences. Fortunately, the internet makes it fairly easy to connect with people all over the world who have similar health problems.

Don’t confuse peer advice with internet research!

Using the internet to diagnose your own condition or to identify potential treatments can provide useful information. But it can also provide inaccurate information. This is not the same as receiving peer support online through forums for specific conditions. (For more information on the trustworthiness of internet research, read my blog post.)

How often are people seeking peer health advice?

A recent survey found that almost 25% of people look for information and/or support from someone with a similar condition.

Why is peer health advice so helpful?

In a nutshell, peer health advice facilitates the emotional, social and practical assistance needed when managing a serious medical condition.

When you hear that you or a loved one has a serious illness or injury, you are completely overwhelmed with the change in health status. Your head is spinning. You don’t know what questions to ask. And you certainly “don’t know what you don’t know”. Furthermore, there is so much information available online, it’s impossible to read or process it all. Peer health advice to the rescue! People who have experience can help us figure out what we need to know. And they can provide tips for managing an illness, including managing side effects, treatments to consider, questions to ask your doctor and more. Additionally, peer support can help patients and their families feel like they are not alone in their medical journey.

According to Jane Weida, MD, President, American Academy of Family Physicians Foundation, there are proven benefits. Peer support helps patients carry out in their daily lives the plans and strategies they worked out with their medical providers. Additionally, it often links support among patients, their families, and their communities. And peer support places a strong emphasis on the whole person, her or his interests, strengths, and needs.

What does the research show?

Studies relating to diabetes management show that peer support provides significant benefits. A review of journal articles published between 2000-2012, 19 out of 20 showed significant evidence of the benefits of peer support for diabetes management.  Additionally, researchers found that diabetes patients who participated in peer-to-peer healthcare lowered their blood sugar levels more than those who didn’t participate.

Furthermore, an extensive review of past research found that across 8 countries and 14 conditions “there is substantial and strong evidence that peer support works as a chronic disease-management strategy”.

A survey of patients found that receiving peer support through the PatientsLikeMe platform help users better understand their condition and treatment. Specifically, respondents reported that peer support gave them an increased understanding of:

  • How their condition may affect them.
  • What might help them live better with their condition.
  • Which treatments were available.
  • Treatment side effects.
  • Important factors in making treatment decisions.

Can you trust the information you receive from peers?

3 women meeting, shaking handsYes. Mostly. Although every patient’s experience is different, and not everything you hear or read will apply to your situation, you can trust most of the advice you receive through peer support groups. Researchers analyzed the information shared over a 4-month period in an online breast cancer support group. Of the 4,600 posts reviewed, the experts considered only 10 (0.22%) false or misleading. Moreover, other participants corrected the information for 7 of the 10 “false” posts within an average of 4 hours and 33 minutes. Only 3 posts with false information remained.

The downside of peer health advice.

Unfortunately, as with most things in life, there are some potentially negative aspects of peer health advice that you should consider. First, it’s important to remember that people respond differently to treatments. What worked for Charlie in Kansas might not help you at all. Or it might even make you sicker.

When dealing with a serious medical condition, do not rely solely on peer advice. Talk to your doctor about your diagnosis, treatment options, medications, and side effects. But don’t be afraid to ask your doctor about items you heard about through peer support. And use good judgement.

Additionally, you might unknowingly read what seems like a personal story but is actually fake news.

How can you find peer support?

There are several ways you can find peer support, which can range from a one-one connection to support from a larger group.

  • Ask your medical team or hospital patient representative if there are patient and/or caregiver support groups at your facility or in your area.
  • Search for on-line for support groups – type in the name of your illness and “support group”. If you want a local connection, include the name of your town/city.
  • Good old-fashioned networking. Ask friends and family members if they know people who have dealt, or are dealing, with a similar condition.
  • Join CarePages® and search by illness or hospital.
  • Join a Facebook group for people with your illness.
  • Search Yahoo!® for discussion forums for people dealing with the same medical condition. There may be one, several, or none for your illness. If there are no groups for you, consider starting one. To find a group on www.yahoo.com:
    • Click on Group tab on the top banner
    • Type in name of illness or injury
    • You may have to apply for membership (in some forums, membership is controlled to ensure that only people dealing with this medical condition are involved)
  • Join PatientsLikeMe®, a free site for interacting with patients and caregivers dealing with illnesses.

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