Social Networks as an Emotional Outlet: How an Opportunity to Talk can Improve the Patient Experience
Amy Ohm discusses the importance for patients to be able to share their stories and feelings through what can often be a traumatic time in their lives, as well as the benefits to adherence of providing an outlet for patients during this time.
People are definitely interested in their health and social is allowing them to share personal experiences and consume the know-how and insight of others. However, not everyone is comfortable sharing in a public forum. It can be challenging to find the person who is “just like you” in a way that does not compromise your privacy or create societal stigma. In addition, there is a constant focus on trust and feeling safe in a social environment, especially as it relates to health. So is social really having the greatest impact helping patients remain compliant with their treatment for an illness?
What if you could be social about your health while remaining anonymous? This may seem somewhat counterintuitive at first, but it’s building empowered and trusted connections among patients who want to be transparent about their health while remaining nameless. This is creating a shift in social allowing users to share all. Removing a face and name by no means discounts the value of the patient story; in fact one could argue it enhances the depth of details shared and brings intriguing perspective to a real life example of a health related experience.
There are numerous positive outcomes as a result of sharing among individuals, but it’s also an indication of patient activation levels specific to health and adherence to treatment. A patient who can be social is taking the first step in assuming an active role in their health. Connecting with those who have similar experiences who are willing to share builds knowledge and confidence in the patient. By exchanging insights and gathering information they begin to take action, building toward maintaining healthy behaviors despite living with a chronic condition. Reaching those who are willing to share in private becomes a tremendous opportunity to the marketplace in sharing educational insight specific to illness related experiences and the importance around remaining compliant in the treatment of the condition.
In a social environment like TreatmentDiaries.com, users share personal stories about health with complete anonymity. Their personal diaries capture the details of their experience and users who share their experience are invited to interact through scribbles. Here are a few examples:
“Dear Diary - Today I felt depressed like never before. I did not want to get up and do anything. I pushed myself to get up and eat, thought about going to the gym but sat in my car for a few minutes and went back to my bed. I have never felt like this before. I started on Wellbutrin, only 10 days ago and I know it will take 3 or 4 weeks to feel better, but i have been taking Lexapro for about 10 years and kept it all together. I am frustrated that I’m not feeling better yet. I found this site and I wanted to join in and get some feedback, some support, just typing this is hard because I am vulnerable but I know it is the best thing I can do.” Hopeless
“Today I realized it has been about 1 week since I have taken my anti depression meds. I can feel myself getting ready to have a meltdown. I can't explain why I seem to go through periods were I stop taking my medication despite knowing what’s going to happen. When I do it's almost like I have too much else on my mind to worry about taking my medication. Maybe at some deep unconscious level I want to have a meltdown so I can get away from reality.” Lost in Meds
“I was diagnosed with RA at 30. It is my regular physician that has me on Lexapro. I have tried many different biologicals for my RA. Currently I cannot take any biologicals for my RA because of the surgery I just had. When I go back to the doctor on February 28 hopefully they will restart my medication for RA. For right now I am just taking something that they give people for malaria. I feel a great sense of relief in finding this web site. Thank you all for your words of kindness and encouragement.” RA30
The intimate and authentic story of the patient is both valuable to individual patients as well as those providing solutions. This is fully realized when the patient has the privacy to share the whole story through total anonymity, opening the door for the market place to build trust around the importance of consuming knowledge and meeting the patient at the center of their care. What if the marketplace could meet this patient at the center of their care and present education and awareness around remaining compliant in their treatment? Perhaps sharing an alternative to the antidepressant which resulted in the side-effects causing this individual to quit taking them or even an alternative to medication all together – this comes through education and understanding your condition and related options.
These patients are truly focused on finding solutions to illness and connections to those who can relate along with the education around what they have. Because they can be social and private about health, seeking resources and solutions is natural. No fear of stigma and no worries around who might uncover their journey with an illness allowing the patient to pursue and embrace the value of remaining compliant and adhering to treatment given a serious ongoing health experience.
Social is in fact bringing significant value to the patient and can be considered an ally in adherence efforts. Keeping it private enhances the value and empowers the patient to tell the entire story. Knowing the entire story allows the market to play a more active role in the overall wellbeing and health of the patient, improving outcomes through disease education and the benefits of treatment adherence.
Amy Ohm is the CEO of TreatmentDiaries.com, a private social network which enables patients to communicate with one another and share their experiences. For more information on how social can assist patients in coping with their experiences, you can contact Amy on amy@treatmentdiaries.com.
This October, patient groups and industry professionals will be meeting in London to discuss this and other patient-related issues, for more information or to subscribe for updates visit the official website.