With so many questions, I think it’s time to start working collaboratively on answers. There are multiple disciplines currently looking at the changing face of the US healthcare system holistically as well as facet-by-facet. As experience designers, I and my colleagues at MISI are actively exploring and documenting what it means and feels like to be a part of this system, and what it should mean and feel like in the future.

FYI…There’s more to this blog post, but if you are interested in learning even more about today’s patient experience and why patient’s fail to follow their doctor’s orders, join MISI on 2/24/2011 in Philadelphia at the Patient Adherence Cocktail Convention hosted by MISI, WoolLabs, and Smart Brief. Visit Wool Labs for more information or to register

Among my many healthcare-related interests is the patient adherence experience. My colleagues and I are finding there is a lot of opportunity across the industry for collaboration on supporting treatment and wellness maintenance regimens.

Drawing on insights gained from several projects involving primary patient research, we are noticing the following themes in the reasons given for why patients fail to fully adhere to the regimens their doctors prescribe.

Lack of understanding of adherence and compliance – patients and caregivers do not always fully understand adherence or compliance, and do not always understand their behavior’s impact on treatment efficacy and overall health.

Lack of incentives and motivation – remaining or becoming healthy should be enough incentive to adhere to treatment and wellness regimens, but patients often require significant evidence or instant results to reinforce changes to their behavior. How many of us have started an exercise regimen just to get frustrated and drop off after a month? Especially for conditions that can be asymptomatic, such as heart disease, or conditions that are not necessarily considered severe, such as acid reflux, seeing the benefits of adherence and maintaining motivation can be a challenge.

Lack of support – once patients receive a prescription or receive instructions on required behaviorial changes, they can feel alone, especially if the regimen is complex. They must take action, often with limited resources or tools and without even someone credible they can trust for guidance, emotional support and information. The effort can feel overwhelming.

Lack of transparency and accountability – patients, first and foremost, are responsible for their behavior, but who else has a stake in their adherence? Who should be monitoring their progress? Their physicians assume responsibility when it’s check-up time, but who should be responsible between visits? And even during a check-up, when it comes to adherence and identifying the challenges and addressing them, the physician most often relies solely on patient self-reporting. Is it reasonable to assume this process can ensure the best outcome?  

Too much assumption – speaking of assuming, it happens a lot on the part of the patient, the physician and the other players in the system. Patients can make many assumptions, such as that a medication is enough without accompanying life changes. Physicians often assume that once they have given treatment instructions to a patient the patient understands, or at least knows where to turn for additional credible information. Hospitals, pharmacies, and insurance companies often assume patients have the necessary knowledge and resources to successfully finance and coordinate care, filter through health and wellness information, and maintain treatment regimens.

These themes may not sound like anything groundbreaking, but they bring to light additional valuable questions.

How do different roles view these barriers to patient adherence?

Is what patients view as being their greatest barrier to adherence the same as what physicians, insurance companies and pharmacists view as being the greatest barrier?

What would it take to tackle each of these barriers?

What are the opportunities across the industry to support patient adherence better?

While there is still a lot to explore, there are certain areas for opportunity that are rising to the top – here are some initial thoughts:

Physicians – as the US healthcare system evolves, physicians will have to define their role as not just a healer or a gatekeeper to treatment, but as a proactive health educator and facilitator, thinking of patients holistically. (See JMH’s post on Personal Healthcare Strategists). In order to accomplish this, physicians will need the support of hospital networks, insurance companies and technology providers.

Insurance Companies – they already have the incentive to keep people healthy, but they are not fully taking advantage of the touch points they have with their customers. Wellness programs need to be better designed to facilitate patient adherence. Incentives, third party partnerships, facilitating information gathering, and the provision of meaningful and easy-to-use tools are areas for opportunity. 

Pharmaceutical Companies – pharma already diligently produces condition information through unbranded and branded outlets. However, there is an opportunity for pharmaceuticals to partner with physicians by expanding their unbranded information outreach efforts. Patients and caregivers are reluctant to trust pharmaceutical companies when information is provided through their marketing channels; however, they trust information that is thorough, credible and delivered through channels perceived as being unbiased. There is an opportunity for pharma to deliver its research-based evidence transparently through trusted information channels.

Pharmacies – big name pharmacies are quickly evolving from being a place only for medication retrieval to being a resource that focuses on customer service and provides information, as well as select treatment and preventive services, such as flu shots. Among many opportunities for pharmacies is the improvement of their communications and processes with physicians and insurance companies. They have a unique opportunity to step in on the side of making medication adherence easier.   

There are more opportunities to discuss, including opportunities for patient support networks, government sponsored programs, and services provided by commercial third parties ranging from local fitness centers to emerging social media tools. I want to open up the conversation.

What is your role and expertise? What do you think about this topic? About the various opportunities? Join the conversation – leave a comment to this post or, better yet, register for our Cocktail Convention on the topic of Patient Adherence, Thursday, February 24, 2011, in Philadelphia, PA. Come share your thoughts and experiences live and in person. Visit Wool Labs for more information or to register.

I learned as part of being acquired by Walgreen’s, Duane Reade introduced a flexible vaccination service, allowing customers to get a flu shot any hours that the pharmacy is open (albeit not well advertised). Some large survey by a market research company probably told them that 87% of customers don’t get flu shots because of inconvenient timing.

But who cares why they are doing it! This is great, or so I thought, until I started this seemingly ideal patient experience process.

I returned the next morning and the pharmacist said, “I’ll meet you over there.” I had no idea where there was, so I waited while she gathered the necessary clinical materials (gloves, needle disposal bin, etc.) from multiple locations and carried everything to a table with 2 chairs outside the entrance to the employees-only pharmacy area and placed everything down in a pile. Picture Rachel Ray carrying ingredients in her studio… except this is someone’s health, not chimichangas.  

Would you get your flu shot here?

I mentioned to her that it was great that she was offering flu shots at any time.  “Yep, we all had to get trained,” she said. I proceeded, “But it’s sorta a pain for you, I mean you have to stop what you’re doing to do this?” She replied,  “Yeah, it can be….”

The flu shot was painless, pharmacy staff was pleasant, and for me the overall experience was just fine. I’ll put aside:

• The original “we are backed up” issue (although many customers may not)….
• The poor advertising about the flexible service…
• The 7-min wait for ‘nurse-in-training’ pharmacist to prep…
• The confusion about where I should sit because of the counter divide between pharmacy staff and customer….
• The seemingly discombobulated setup that gave the impression this was their first time doing this….

Those are issues that can be solved – though not easily – with better customer communications and improved spatial design. But what about the pharmacists and employees at Duane Reade who need to literally stop the  work they are doing and the flow of their day for each and every flu shot customer? And if they don’t, they have more of those “15-minute backup issues” and potentially disappointed flu shot customers….

Or what about those non-flu Rx customers whose experience is disrupted by the flu shot processes – those patients who simply need to ask a question about their new Rx while the pharmacist is busy giving flu shots. Finally, what about these inefficiencies’ subsequent impact to DR’s bottom line? For every flu shot customer, assume 10 minutes of lost pharmacist work time.

This is a great example for why you can’t have blind focus on the customer, patient or any single group. Without considering the experience and change management for all people: pharmacists, pharmacy support, customers (both flu shot and not), Duane Reade may have started a tidal wave of good intentions that has ripple effects to the business that they didn’t see coming.

The principles we spoke to during our 14 minute testimony are familiar to anyone in the experience design, interaction design or usability industries. 

1)     Put Your Audience in the Driver’s Seat

2)     Speak Your Audience’s Language

3)     Design to Support the Task, Not Become the Task

4)     Provide a Clear Navigation Structure

5)     Mimic the Real World

6)     Be Consistent and Follow Platform Standards

7)     Keep It Simple

8)     Be Flexible and Efficient

9)     Engage Your Audience

10) Support Your Audience and Give Feedback

These principles ensure that the Audience (the “User”) is kept at the center of design at all times.  We were able to apply these principles to a few concrete examples of how it should look when an FDA-regulated pharmaceutical industry is engaging in social media. 

The Hearing

Throughout the hearing there was a lot of defense of Pharma’s place in the social media dialogue.  This included testimony that factual information provided by pharmaceutical companies can benefit people looking for answers in the Wild West of online information.  One point we made that seems to have resonated with people in the industry was not around whether companies should be able to share product information, but rather, how they can do it without interfering in the dialogue that is inherent to social media.  For example, we noted that product information should be kept separate from the dialogue, perhaps not even on the same page, where it can potentially disrupt the dynamic content that people want and expect when engaging with others in a social forum – Design to Support the Task, Not Become the Task. 

With regards to Important Safety Information (ISI), one of the hearing’s major concerns, we used the design principles to guide options as to how ISI can be displayed when pharmaceutical companies participate on various social media platforms.  First and foremost, being Flexible and Efficient comes into play because different social media have different inherent qualities and limitations.  For example, ISI traditionally appears at the bottom of a standard web page where people have come to expect it (Be Consistent and Follow Platform Standards). However, if this placement isn’t possible, as when posting a comment on a page or board that is not sponsored by the company, ISI should be included via a link.  It’s critical when doing this to be mindful that people will not do something unless motivated; so companies must make sure the audience understands what the link is for and include appropriately descriptive text.

You can check out a PDF of our presentation deck here: MISICompany_FDAHearing_Final

Some Highlights from Others

An interesting twist on the concept of having descriptive links was the consortium of speakers who advocated for an FDA link or insignia that would indicate where to click for ISI and would serve as an indication that the source was legitimate.  This idea inspired many questions from the panel and among people in the audience – what would the FDA’s role be in the use and governance of such an insignia or link?  Would it only be regulated products or could anyone start to use that same insignia? 

One of the best presentations was from the CEO of Heartbeat Digital, Bill Drummy, as he walked the FDA panel through a hypothetical health information search online, capturing all of the places where someone interested in information on rheumatoid arthritis might be bounced around through search engines, ads and social media.  He walked them through what the experience might be like, flaws and all, which worked to provide a perspective on where the influence of pharmaceutical companies can benefit the experience, and where their influence needs to be monitored so as not to interfere.    

The majority of presenters did have a focus on patients and caregivers, but a few also focused on the Health Care Professional (HCP).  There was a shared understanding among many of the presenters that HCPs are looking for unbiased clinical information (not promotional language), and want to ask advice of other physicians, as long as there is transparency regarding any affiliations the physicians providing the information might have with pharma companies, and clear presentation of their credentials. The openness of authorship and audience in social media makes the physician’s choice and use of social media a delicate matter.  

Pfizer gave a great presentation to close out the hearing that walked the FDA panel through their journey of discovery regarding how physicians engage in social media and resist promotion in the space, giving examples from their partnership with Sermo. 

Final Thoughts

Despite general agreement among various presenters in many areas, there were also competing thoughts that the panel will have to filter through and a lot of hard supporting data that the panel will want to analyze. And even more information will be trickling into the open docket, which will close at the end of February 2010. 

Do we think that something will come of these hearings?  Yes.  Will it be slow to come?  Probably— but through no fault of the FDA.  It is a tricky subject!  Most importantly, we think that whatever the FDA panel decides will incorporate some of the consistent themes struck throughout the two days of hearings: pharmaceutical companies needing to clearly identify themselves when participating in social forums, the need for flexibility and clarity when dealing with ISI, and giving heed to the preconceptions that some groups have when dealing with pharmaceutical companies. 

As for how this will affect the people using these evolving interactive tools, we anticipate that many patients and caregivers will welcome having the opportunity to hear pharmaceutical companies’ voices as part of the social dialogue. However, physicians may become even more cautious and selective when it comes to engaging in any online dialogue in a forum where pharmaceutical companies are participants.   

Here is the link to the FDA’s site on the public hearing. You can acces transcripts, the webcast and submit electronic comments through February 28, 2010

A PDF of our presentation deck is here: MISICompany_FDAHearing_Final