As social networking is examined in the broader context of the health care field, and specifically the field of pharmacy, it is important to consider the perspective of patients. The patients whom we are providing care for will be at the center of this technology adoption, and understanding their behavior provides insight into the uptake of these technologies.

1. SOCIAL NETWORKING: THE
ROLE OF PHARMACISTS
AND THE EXPECTATIONS OF
PATIENTS
C O D Y M I D L A M , P H A R M . D . , C G P
C L I N I C A L C O N S U LT A N T P H A R M A C I S T

2. INTRODUCTION
• Social Networks are here to stay
• Rapid, global adoption over the last decade
• Social networks move into many new areas including: business, health,
education
• On the health front patients discuss their disease states and the
medications they take for their diseases
• Good information is valuable
• Bad information can be dangerous
• The purpose of this research is to better understand what patient’s
expect when they participate in social networks and what role
pharmacist will play in meeting their expectations

3. WHAT’S SO GREAT ABOUT TALKING TO OTHER
PATIENTS?
Thomas Jefferson captured the sentiment in a letter to
a friend in 1786, "Who then can so softly bind up the
wound of another as he who has felt the same wound
himself?"
References: Fox, Suzannah., Purcell, Kristen. Chronic Disease and the Internet. March 24, 2010. Accessed online at
http://pewinternet.org/~/media//Files/Reports/2010/PIP_Chronic_Disease_with_topline.pdf

4. BACKGROUND
• Social Networking is new, Health-related social
networks are even newer
• There is a lack of data regarding patient’s
expectations of these communities
• Those most interested in understanding patient
behaviors on social networks may have vested interest
• Understanding the role of pharmacists requires
speculation
• Pharmacists are not widely involved in this area
currently

5. CURRENTLY OPERATING WEBSITES &
NETWORKS
• Patients Like Me
• True social networking: patients discuss therapies with one another openly
• Cure Together
• Crowd-sourcing vs social networking: patients take surveys and reports current states of
health which are aggregated and presented for public review
• Alliance Health Networks
• Social networking: organization of 50 social networks and 1.5 million registered
members
• “Ask a pharmacist”
• Inspire
• Support groups ~250,00 patients
• Link with 75 national patient advocacy organizations
• Global reach
• Medhelp.org
• International forums
• “Ask a Pharmacist”
References: Dose of Digital. Pharma and Healthcare Social Media Wiki. http://www.doseofdigital.com/healthcare-pharma-social-media-
wiki/

6. INCREASINGLY COMMON
• Percentage of patients who have gone online to find others with similar
health concerns
• 50% of patients with rare diseases
• 23% of patients living with chronic conditions including hypertension,
diabetes, heart disease, lung conditions, cancer, or another chronic ailment
• 15% of internet users with no chronic illness have gone online to find others
with similar health conditions
• AGE:
• 65 years and older: 10%
• 50-64 years of age: 18% have gone online to find others who have similar
health conditions
References: Fox, Susannah. Peer-to-peer healthcare. February 28, 2011. Pew Internet & American Life Project. Accessed online at
http://www.pewinternet.org/~/media//Files/Reports/2011/Pew_P2PHealthcare_2011.pdf.

7. WHO IS USING SOCIAL NETWORKS FOR
HEALTH?
• “E-patients defined: individuals who are equipped, enabled, empowered
and engaged in their health and health care decisions” -- Tom Ferguson,
M.D.
• Are all patients equipped and enabled?
• In another study from the Pew Internet Project and the California
HealthCare Foundation show that adults living with chronic disease are
significantly less likely than healthy adults to have access to the internet:
• 81% of adults reporting no chronic diseases go online.
• 62% of adults living with one or more chronic disease go online.
• 52% of adults living with two or more chronic diseases go online.
• Social networking requires access to the internet

8. DIFFERENT TYPES OF INFORMATION REQUIRE
DIFFERENT SOURCES
• Peer networks can
offer support
• Professionals are
still the most
important providers
of information
about prescription
drugs
References: Fox, Susannah. Peer-to-peer healthcare. February 28, 2011. Pew Internet & American Life Project. Accessed online at
http://www.pewinternet.org/~/media//Files/Reports/2011/Pew_P2PHealthcare_2011.pdf.

9. WHY DO PATIENTS GO TO THE INTERNET
• A study examining reasons why patients seek health information on the
Internet found that patients who searched the Internet expressed
• frustration with obtaining information from traditional sources
• a lack of trust in their provider
• the desire to remain anonymous in their inquiries
• they were looking on behalf of someone else
References:
1. Eysenbach G, Diepgen TL. Patients Looking for Information on the Internet and Seeking Teleadvice: Motivation, Expectations, and
Misconceptions as Expressed in E-mails Sent to Physicians. Arch Dermatol. 1999;135(2):151-156. Accessed online at:
http://archderm.jamanetwork.com/article.aspx?articleid=477733

10. WHY DO PATIENTS GO TO COMMUNITIES?
• In a 2007 Study of the Association of Cancer Online Resources found
that informational support was the most common theme among
community members, even more so than emotional support
• Examples of ‘informational support’ are listed below:
• Specific treatments: case histories, treatment types, and factors to consider in
making treatment decisions
• Communicating with health care providers to obtain good care, ie:
communication factors that could affect quality of care, strategies for
obtaining good cancer care
References: Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK How Cancer Survivors Provide Support on Cancer-Related Internet
Mailing Lists J Med Internet Res 2007;9(2):e12 URL: http://www.jmir.org/2007/2/e12/

11. INFORMATION SHARING/ COMMUNITY-
BUILDING
• Study of Facebook diabetes groups
• Users post concerns about possible adverse effects to see if their own
experiences correlate with those of others
• 24% of posts shared sensitive aspects of diabetes management unlikely to
be revealed to doctors
• Pooled opinions
• One example involves a Facebook group urging members to contact a
prominent insurance company, “The local Medtronic rep has let us know that
BC/BS will be reviewing all comments made to them on this topic soon, so
June 13th is the deadline to send a comment…”
• The thread goes on to list how to get in touch with the insurance company
regarding Medtronic’s insulin pump coverage
References: Greene, J., Choudhry, N., Kilabuk, E., Shrank, W. Online Social Networking by Patients with Diabetes: A Qualitative
Evaluation of Communication with Facebook. J Gen Intern Med 26(3):287–92 DOI: 10.1007/s11606-010-1526-3 © Society of General
Internal Medicine 2010. Accessed online at: http://www.springerlink.com/content/nrtr7h2254764886/fulltext.pdf

12. DO PATIENTS VALUE ACCURACY?
• 52% express concern about making a decision based on incorrect
information
• What quality markers do patients check for on healthcare web pages?
• Authorship ranks highest at 80%
• The lowest at 25% checks for whether a website has an internal or external
quality review process.
• Three-fourths of patients access health information sites via search
engines
References: 1. Stvilia, B., Mon, L., Yi, Y. (2009). A model for online consumer health information quality. JASIST, 60(9), 1781-1791.
http://dx.doi.org/10.1002/asi.21115). Accessed online at: http://mailer.fsu.edu/~bstvilia/papers/conHealthcareIQ.pdf
2. Anderson, K., Smith, L., Garrett, D. Social media “likes” healthcare. From marketing to social business. April 2012. Price Waterhouse
Coopers Health Research Institute. Accessed online at http://www.pwc.com/mx/es/industrias/archivo/2012-04-social-media-likes-

13. PRIVACY ON SOCIAL NETWORKS
• A national report finds the top two privacy concerns
expressed by health consumers are:
1. 63% express concern about personal health information being
shared in public
2. 57% express concern about information being hacked or leaked
References: Anderson, K., Smith, L., Garrett, D. Social media “likes” healthcare. From marketing to social business. April 2012. Price
Waterhouse Coopers Health Research Institute. Accessed online at http://www.pwc.com/mx/es/industrias/archivo/2012-04-social-
media-likes-healthcare.pdf

14. USERS RESPOND TO STOLEN DATA
• ‘Scraping’ incident PatientsLikeMe, May 7, 2010
• Wall Street Journal article highlights patient response to incident in which
data was ‘scraped’
• ‘scraping’ is a practice employed by data firms to harvest online
conversations for which information can be used for marketing practices
• May 27, 2010, President and Co-founder of PatientsLikeMe releases a
statement to users of the site describing the practice and steps taken to
prevent data compromise
References: Angwin, S., Stecklow, S. ‘Scrapers’ Dig Deep for Data on Web. October 11, 2010. The Wall Street Journal. Accessed
online at: http://online.wsj.com/article/SB10001424052748703358504575544381288117888.html

15. HOW DO PATIENTS RESPOND?
• 25 comments posted to PatientsLikeMe site regarding incident:
• 13 posts are ‘positive’
• Out of 25 posted comments, one is negative
• Patients appreciation for safeguards to limit data theft
• “I can live with you selling the information as long as you continue to
reinvest in the infrastructure of the site and keep it more than just up to
date. Cutting edge is what I have found here and I expect you will still
provide this.”
• “ Also, I was particularly impressed with your bot-detector software, and
the top-notch clear/concise description of what such things do.”
References: Heywood, B. The Value of Openness. Transparency, Openness and Privacy. May 20, 2010. Accessed online August 4,
2012. http://blog.patientslikeme.com/2010/05/20/bentransparencymessage/

16. THE ‘GREATER GOOD’ PHENOMENON
• Price Waterhouse
Cooper Study, 2012,
demonstrates One-
third of health
consumers surveyed
said they would be
comfortable having
their social media
conversations
monitored if that data
could help them
identify ways to
improve their health
or better coordinate
care.
References: Anderson, K., Smith, L., Garrett, D. Social media “likes” healthcare. From marketing to social business. April 2012. Price
Waterhouse Coopers Health Research Institute. Accessed online at http://www.pwc.com/mx/es/industrias/archivo/2012-04-social-
media-likes-healthcare.pdf
Patients Comfortable Sharing
their information

17. TU-DIABETES PROJECT
References: Weitzman ER, Adida B, Kelemen S, Mandl KD (2011) Sharing Data for Public Health Research by Members of an
International Online Diabetes Social Network. PLoS ONE 6(4): e19256. doi:10.1371/journal.pone.0019256. Accessed online at:
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0019256#pone-0019256-g001

18. PATIENT-CONSENTED RESEARCH
• Overall, 81.4% of TuAnalyze users chose to include their data in charts,
graphs and maps describing the community with 34.1% of the total also
sharing their personal A1c data on their profile page.
• high willingness to share personal health information for research
conditioned by perceptions of autonomy, anonymity, context and purpose
• In the population as a whole, less restrictive privacy settings were
associated with better self-reported measures of glycemic control.
Users selecting the most permissive sharing option (profile-display)
had a lower average A1c (6.8%) than users with the most restrictive
setting (7.1%, p = .038).
References: Weitzman ER, Adida B, Kelemen S, Mandl KD (2011) Sharing Data for Public Health Research by Members of an
International Online Diabetes Social Network. PLoS ONE 6(4): e19256. doi:10.1371/journal.pone.0019256. Accessed online at:
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0019256#pone-0019256-g001

19. PATIENT’S EXPERIENCE IN ONLINE HEALTH
COMMUNITIES
• A study by Priya Nambisan hypothesizes four dimensions of a patient’s
experience in participating in online health communities
1. Pragmatic experience
2. Empathetic experience
3. Sociability experience
4. Usability experience
References: Nambisan, P., Evaluating patient experience in online health communities: implications for health care organizations.
Health Care Manage Rev. 2011. Apr-Jun; 36(2): 124-33.

20. PRACTICE IMPLICATIONS
1. Pragmatic experience:
 Features like ‘‘ask a nurse’’ or ‘‘ask a doctor’’ can significantly contribute to
the information needs of this population
2. Empathetic experience:
 Incorporating statistical tools that the members can employ to better
understand the disease demographics of the online community
3. Sociability experience:
 Features that allow patients to form their own groups that share a purpose
4. Usability experience:
 Incorporating other social media and making the community accessible via
mobile phones
References: Nambisan, P., Evaluating patient experience in online health communities: implications for health care organizations.
Health Care Manage Rev. 2011. Apr-Jun; 36(2): 124-33.

21. DOES IT HELP PATIENTS?
• Information is powerful when patients have access
• Social networks can impact behavior change and health improvements in
one person may spread to another through a “viral” process.
• Analysis finds that when colorectal cancer patients seek out health
information from the internet and news media, they are more likely to be
aware of and receive the latest treatments for their disease
• Examples from PatientsLikeMe
• Users perceived the greatest benefit in learning about a symptom they
had experienced; 72% rated the site “moderately” or “very helpful.”
• Patients found the site helpful for understanding the side effects of their
treatments 57%.
• 42% agreed that the site had helped them find another patient who had
helped them understand what it was like to take a specific treatment for
their condition.
References:
1. Shaw, Ryan J., Johnson, Constance M. Health Information Seeking and Social Media Use on the Internet among People with Diabetes. Online
Journal of Public Health Informatics * ISSN 1947-2579 * http://ojphi.org * Vol.3, No. 1, 2011 Found online at:
http://firstmonday.org/htbin/cgiwrap/bin/ojs/index.php/ojphi/article/viewFile/3561/3011
2. ScienceDaily. Retrieved July 14, 2012, from http://www.sciencedaily.com/releases/2009/02/090223083146.htm
3. Wicks, Paul. Information wants to be free, but when it comes to clinical trials can we afford to let it be? February 2012, Vol. 2, No. 2, Pages 125-
127. Found online at: http://www.future-science.com/doi/full/10.4155/cli.11.182
4. Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T, Bradley R, Heywood JSharing Health Data for Better Outcomes on
PatientsLikeMe. J Med Internet Res 2010;12(2):e19. URL: http://www.jmir.org/2010/2/e19/

22. SO… WHAT’S A PHARMACISTS’ ROLE?!
• Meeting patient expectations a concern?
• 70% of consumers would expect healthcare companies to respond within a
day to a request for information via social media, while just over 40% would
expect a response within a few hours.
• Validity?
• No Medical Advice. ____ does not provide medical advice and nothing
contained herein shall be construed as medical advice. Statements and
posts on this website have not been evaluated by the FDA, and are not
intended to diagnose, treat, cure or prevent any disease.
References:Anderson, K., Smith, L., Garrett, D. Social media “likes” healthcare. From marketing to social business. April 2012. Price
Waterhouse Coopers Health Research Institute. Accessed online at http://www.pwc.com/mx/es/industrias/archivo/2012-04-social-
media-likes-healthcare.pdf

23. HOW PHARMACISTS CAN MEET THE
EXPECTATIONS OF PATIENTS
• Accessible,
professional
healthcare advice
• 24 hour access?
• Confidential
consultation
• Professional advice?
• 24 hour access
• Private vs public
discussion?
The solution?
• Information sources likely to continue separately at this time
• Role for pharmacist may be in providing validity for claims
made in peer-to-peer discussion groups