It’s Not What You Think You Know, It’s Who You Trust Maximizing Our Collective eHealth Knowledge

May 18, 2011

Internet Skills Performance Tests: Are People Ready for eHealth?. This recently published study by van Deursen, Ph.D and van Kijk, Ph.D points to some fundamental issues in eHealth and the Internet that affect SMHC group think. http://tiny.cc/bnmzh

During our Sunday 8PM central time #HCSM (Healthcare Social Media) Tweet chats SM (Social Media) is sometimes positioned as a solution to various HC problems, needs, and audiences. Many of us see SM as part of a larger strategy or program. I’m firmly in the camp of the later; SM is part of a larger strategy. I see SM’s biggest benefit as part of an eHealth learning strategy. (Later this month, I will post a view of SM, learning, and consciousness.)This study and the recent data presented by Pew Research points to a goal: improve the ability of all patients to access HC (healthcare) knowledge/information and apply it to their HC needs and goals. We don’t need more data. We need more knowledge translation.

The Deursen and Kijk study is an amazing read with each paragraph holding a nugget of information, a reference, or data that refines a currently held belief, or changes a long held belief. Highlights from the study that I found compelling were:

People frequently search online for health information when prescribed a new medication or course of treatment, dealing with a medical condition, having an unanswered questions post MD visit, or when to change diets/exercise.

Search engines and basic search terms do not seem to provide efficient access to health information. Finding fast and not evaluating is the rule along with exploring only a few links.

The study measured four skill sets: operational, formal, information, and strategic Internet skills

The principle results from this study are:
In the domain of healthcare having sufficient levels of information and strategic skills is important especially when the information is questionable or taken for granted.

They further found that operational, information, and strategic Internet skill do not grow with the years (bad habits are retained). Participation in a course had a minor positive influence on level of information and Internet skills while getting help from peers was a negative influence. (People reinforce bad habits among each other)

The most important skills when using the Internet for health purposes are information and strategic skill sets when making decisions based on retrieved information. The gap between content found and application must be improved.

Pew Research Center just published The Social Life of Health Information, 2011. http://tiny.cc/5846i

The Social Life of Information is another great read with reams of data and information regarding who and why people search the Internet for Health Information. The Summary of Findings section opens with the following quote “’I don’t know, but I can try to find out’ is the default setting for people with health questions”. This fits well with my view on adult learning: adults will only learn when they are seeking a solution to a problem they are having. It supports the Deursen and Kijk study.

Some of the key findings are:
80% of Internet users have looked online for information about any of 15 health topics such as a specific disease or treatment. This translates to 59% of all adults.

18% of Internet users, or 13% of adults, have gone online to find others who might have health concerns similar to theirs.

16% of Internet users, or 12% of adults, have consulted online rankings or reviews of doctors or other providers.

15% of Internet users, or 11% of adults, have consulted online rankings or reviews of hospitals or other medical facilities.

15% of social network site users, or 7% of adults, have gotten any health information on the sites.

“I know, and I want to share my knowledge” is the leading edge of health care. (Consider this in light of the Deursen and Kijk study. Are we reinforcing suboptimal knowledge?)

4% of Internet users, or 3% of adults, have posted their experiences with a particular drug or medical treatment.

4% of Internet users, or 3% of adults, have posted a review online of a doctor.

3% of Internet users, or 2% of adults, have posted a review online of a hospital.

These two studies that tell us: a whole lot of people are using the Internet for eHealth, social media is the currency of the realm, and people do not have the skills necessary to find the right information, qualify it, and apply it.
In my view the Pew data demonstrates the massive reach of the Internet for healthcare patients and its frequency in HC use. The Dutch study shows we may not be maximizing the user online experience (e.g. by not ensuring the quality of data and the application of knowledge). eHealth patients may not know what they don’t know. Those of us familiar with HC, the Internet, and SM should strive to improve patient skills at finding, assessing, and applying HC knowledge.

If healthcare professionals and those interested in HCSM are to improve patient outcomes we should strive to improve the ability of all to find and use knowledge. We need to stop talking to ourselves and begin to understand the needs of the majority of people seeking and applying HC knowledge from the Internet. We need to help improve learners’ skills at finding data and the ability of the user to apply new knowledge to their HC needs.

The Pew data shows respondents trust and respect their physicians. Doctors who are involved in SM and eHealth should strive to bring more of their patients online and participate in SM. This is not a call to practice medicine online. Rather it is a call to have those who know how to use the Internet for HC teach others how to become better patients and caregivers. We need to help people find the best information possible and apply it to their problems.

Hospital systems and/or departments may want to offer courses in online HC searching and how to critically appraise data. For example an OB/GYN department may offer this course and invite to ePatients, former patients, and outpatients for a general tutorial. This activity can be extended after the course to help create a working community of patients with common interests and problems. The department should take the lead as a learning community. Own the channel in teaching patients how to improve their ability to translate and apply knowledge.

Your department or practice can serve as a patient model of eHealth. Don’t think 500 users hits on your Web site. Think 50 newly trained and skilled HC and Internet users/patients who can each teach one or two more. It’s not the size of the community, but the collective knowledge and skill that ultimately improves outcomes. Healthcare is a team sport.

The future for eHealth is not the large aggregate models like WebMD, pharma web sites, or Facebook. The real future that will bend the HC cost curve and improve outcomes are small discreet communities of knowledge and expertise built around a trusted resource and health partner, my physician and his patients.

I trust my physician to care for me. It is only a small step to trust him/her for his/her links, documents, community, etc. If my physician makes me a better patient better at acquiring knowledge it’s as important to me as a fast, accurate, and cheap diagnosis. And what’s better I don’t have to talk to him (conversely he doesn’t have to spend hours teaching, texting, emailing, calling). He just has to help me know where to go, where to learn, what to trust, and how to use it. And he doesn’t have to do it all himself. He simply has to leverage his community. He will see the results in my outcomes.
What are your thoughts?