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 L T A N T P H A R M A C I S T

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

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

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

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/

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.

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

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.

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

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/

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

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-

healthcare.pdf

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

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

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/

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

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

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

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.

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.

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/

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

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