The following presentation supported the remarks made by Alisa M. Hughley, Principal at enBloom Media, LLC as a member of the featured patient panel: Patient Initiated Campaigns - Strategies to Increase Support & Engagement discussion convened during the 14th Annual Patient Adherence & Access Summit (PAAS2015) held on June 24, 2015 in Philadelphia, Pennsylvania.

The pharmaceutical industry can learn to lean in to listen and understand people managing chronic conditions (or catastrophic illness) and their caregivers.

On March 26, 2015 Kathleen Hoffman (@drkdhoffman) and Alisa Hughley (@enbloommedia) conducted an online focus group via Twitter. We like to call them Tweet Chats.

T1.  How do you feel about the word "adherence"?  the word "patient"?

T2.  What would cause you personally to not take your medication as your physician prescribed?
T2a. Have you ever been in a situation where you could not afford to pay for your prescriptions?
T2b. Have you ever shared the side effects of a prescribed medicine and inquired if an alternative was available?
T2c. Do you feel your health care provided takes your needs and values into consideration when making a treatment plan?

T3.  The pharmaceutical industry is very interested in "patient adherence."  Do you have any recommendations you would like me to share?

Follow co-hosts: @drkdhoffman @enbloommedia @hchlitss
and
Join the Health Communication Health Literacy and Social Science Tweet Chat:
January - July* and September - December on Thursdays 8:00 pm EST/EDT (5:00 pm PST/PDT) on Twitter or your favorite platform using #HCHLITSS

*summer hiatus lasts from July 4 - Labor Day

The first question posed by the PAAS panel moderator was, "What does adherence mean to you?"

Dr. Hoffman mirrors this question to the focus group by asking T1.  How do you feel about the word "adherence"?  the word "patient"?

adherence /ædˈhirəns/: the act of adhering
especially : the act of doing
what is required by a rule, belief, etc.

Source: Mirriam-Webster Learners Dictionary online

Dr. Hoffman mirrors this question to the focus group by asking T1.  How do you feel about the word "adherence"? the word "patient"?

Again, here were the questions posed to the focus group by Dr. Hoffman:

T1.  How do you feel about the word "adherence"?  the word "patient"?

T2.  What would cause you personally to not take your medication as your physician prescribed?
T2a. Have you ever been in a situation where you could not afford to pay for your prescriptions?
T2b. Have you ever shared the side effects of a prescribed medicine and inquired if an alternative was available?
T2c. Do you feel your health care provided takes your needs and values into consideration when making a treatment plan?

T3.  The pharmaceutical industry is very interested in "patient adherence."  Do you have any recommendations you would like me to share?

Using the mobile app, Textal Alisa Hughley analyzed the all tweets answering T1 and found the following words associated with the question, posed:

Follow, Uninvolved, Paternalistic

These words have strongly negative connotations to patients and caregivers.

Hughley also found these words associated with the question:

Communication, Decision-making, Discussed

These words also have a relationship to the concepts of adherence or compliance.

Barriers to "Adherence" can be classified as:

A - Financial Barriers (formularies, specialty drugs, not covered by insurance)


Note that specific responses included:

Not everyone on the same page with the therapeutic plan

The plan isn't easy to follow. 

Instructions for taking medication aren't specific enough  
Medication costs too much

Medication effects quality of life

Taking the Medication isn't related to a personal goal (like seeing a child graduate from college)

Lack of support to continue on the medication

Poor health literacy

medical inserts are difficult to read…not in plain language

medical inserts are hard to read

Poor lines of communication between "team " members

Other barriers to "Adherence" can be classified as:

B - Ineffective Communication
1) Inconsistent with personal values or lifestyle (self-injection, taking drugs for your GI condition with food)

2) Low health literacy

3) Failure of health care team to communicate in plain language

4) Failure of health care team to include patient on the team

Note that specific responses included:

Not everyone on the same page with the therapeutic plan

The plan isn't easy to follow. 

Instructions for taking medication aren't specific enough  
Medication costs too much

Medication effects quality of life

Taking the Medication isn't related to a personal goal (like seeing a child graduate from college)

Lack of support to continue on the medication

Poor health literacy

medical inserts are difficult to read…not in plain language

medical inserts are hard to read

Poor lines of communication between "team " members

Other barriers to "Adherence" can be classified as:

B - Ineffective Communication
1) Inconsistent with personal values or lifestyle (self-injection, taking drugs for your GI condition with food)

2) Low health literacy

3) Failure of health care team to communicate in plain language

4) Failure of health care team to include patient on the team

Analysis with the Textal app of all the tweet in response to T2a and T2b revealed the following words in closely associated to the idea of barrier to adherence:

Communication, Side Effects, Literacy, Understanding

It is naive for health care providers to think that patients are not a part of their own clinical team. Nor can health care providers underestimate how much personal values and priorities regarding quality of life impact "adherence" to treatment plans. The patient is the only expert in these areas.

Here's a selection of some stand out answers to the final question posed by Dr. Hoffman to the focus group:

T3.  The pharmaceutical industry is very interested in "patient adherence."  Do you have any recommendations you would like me to share?

Here's a selection of some stand out answers to the final question posed by Dr. Hoffman to the focus group:

T3.  The pharmaceutical industry is very interested in "patient adherence."  Do you have any recommendations you would like me to share?

Here's a selection of some stand out answers to the final question posed by Dr. Hoffman to the focus group:

T3.  The pharmaceutical industry is very interested in "patient adherence."  Do you have any recommendations you would like me to share?

The PAAS Conference attendees were also interested in exploring successful social media campaigns and how they may influence patient "adherence."

Successful social media campaigns have common traits:

Building community:
by sharing stories, providing access to expert point of view

Add value:
by amplifying the patient voice, supplying an empathetic ear, providing resources

This newly launched website of the Ketamine Advocacy Network does this: builds community by allowing moderated user-generated content and adds value by providing key resources and amplifying the patients voice. (Learn more at http://http://www.ketamineadvocacynetwork.org/)

The PAAS panel moderator asked how can companies in the Rx space use social media to engage patients?

Combination of moderated user-generated content (e.g. pin pictures, upload videos, re-tweet Rx company health messages, use Rx company generated # or join Rx company moderated/sponsored tweet chats)

The PAAS panel moderator also wanted to know what was success #hchlitss chat & enBloom Media have had with patient populations with regard to social media engagement?

Social media works best when fully integrated into a marketing and public engagement plan. It is one tool in the tool box that can extend the reach/impact of face-to-face events or lay the groundwork and interest and support to inspire face to face events.

How do you measure the success and ROI?

Truthfully, this is difficult to measure (impressions are currently the most commonly used measure, but this is no precise).

Appropriate measures are a function of your goal:
1) increase awareness 2) drive traffic 3) generate downloads

The final point the focus group participants wanted members of the Rx community to understand that it's not about "adherence" or "compliance." Patient engagement is more than a buzzword or industry jargon---at least in the eyes of patients (especially the chronically or catastrophically ill).

We like how the following focus group participant, #hchlitss tweet chat regular and member of the health care provider community summed it up:

"Would 'Follow the plan agreed upon in joint decision making with health care provider' sting less?"
~@yayayarndiva, pediatrician

Follow co-hosts: @drkdhoffman @enbloommedia @hchlitss
and
Join the Health Communications Health Literacy and Social Science Tweet Chat:
January - July* and September - December on Thursdays 8:00 pm EST/EDT (5:00 pm PST/PDT) on Twitter or your favorite platform using #HCHLITSS

*summer hiatus lasts from July 4 - Labor Day

See all analyses for the focus group transcript generated via Textal at (best viewed via mobile device):

T1. http://www.textal.org/gallery/c2f90440dcac

T2a-b. http://www.textal.org/gallery/48268fe3b839

T2c. http://www.textal.org/gallery/0a784f8fae09

T3. http://www.textal.org/gallery/81df944a7b67

For analytics on
Focus group (3/26/2015), visit:
http://bit.ly/1LIrLmR

Follow-up discussion (6/25/2015) visit:
http://bit.ly/1LtGuV2