Patients are Talking – But is the Healthcare Industry Listening?

By Maya Leiva, PharmD, and Terry Wolters, MBA; NotifiUs, LLC- Patient Engagement Management

We know healthcare stakeholders are working hard to support individual patients. But at times it feels like there are so many “barriers” between us patients’ and those organizations responsible for providing our healthcare, that our voice is not heard.  

Let’s take the price of medications as an example. It was disturbing to read recently that some patients with diabetes are turning to non-approved sources for insulin, because they can’t afford the medication from approved/regulated sources. Other reports relay the monthly decision some diabetic patients face between making their mortgage payment and purchasing needed insulin. Even more shocking, some oral anti-cancer medications are now costing tens of thousands of dollars each month; placing excessive cost burden on patient or payer or both!

In markets guided by competition; factors such as price, product, promotion and place (the traditional 4 P’s of marketing) are closely studied by the product or service provider with feedback from the consumer in constant and continuous analysis. Pricing that is too high, as indicated by lack of consumer purchase, signals to a competing producer the opportunity to release a similar good or service at a lower price and gain market share. With regulated markets like healthcare however, the oversight from “regulators” - government agencies, and the interaction with representatives from the private sector (e.g. lobbyists representing pharma manufacturing, payers and providers) - restricts these normal market interactions for the benefit of the general public. In the specific case of medications, regulations address issues of medicine safety and protecting the return on investment for those companies who invest significant capital to research and develop new medications. An argument can be made that when the price of a medication restricts its proper usage by patients (i.e. the patient cannot adhere to their prescription requirement because of the inability to purchase the meds) then patient “safety” is at issue and the effectiveness of the regulatory oversight should be challenged.   

There is no skirting the many challenges and complexities faced by the pharmaceutical manufacturing industry to bring new medications to market. Some estimates reflect a $2.3B dollar investment needed to complete the research, safety approvals and market introduction of a new single drug. Other estimates believe the $2.3B investment encompasses the money lost from the nine other tested and failed drugs before the one successful introduction. Still other research demonstrates the true investment for a single drug introduction as roughly $700M, provided enough research/evidence is available to help limit the number of drug intro failures. Whatever the exact cost to introduce new drugs to the market, the amount is significant, time consuming and risky.

We do know that much of the drug approval cost depends on the expense and resources to conduct the pre-clinical studies and clinical trials to prove drug safety and efficacy to secure and maintain regulatory approval. The agency responsible for the drug approval is the Food and Drug Administration (FDA). The FDA continues to move from collecting patient/provider feedback on drugs through passive surveillance programs to more analytical and real time programs that review patient feedback, or data, through electronic health records, insurance claims and registries while protecting patient confidentiality. The goal is to broaden and accelerate the current research practices and complete studies on a more cost effective and responsive basis.

Even with the use of more accessible electronic sources for patient data the rate at which the healthcare industry comprehends and responds to patient issues, like medication pricing, lags too far behind a timely “fix” – and in some cases contributes negatively to patient safety. Healthcare providers may collect certain information about patients and their use of and reaction to certain medications but many reasons preclude the use of that data with other stakeholders such as pharma manufacturers, pharma distributors or even payers. Between care providers, payers, and pharma companies we have many different silos of data about patients and their interaction with medications.

It is certainly frustrating for the different stakeholders to try and obtain data from these different sources, and it is particularly frustrating for the patient because it puts the burden of communicating concerns about the medication directly on their shoulders. Communicating issues of drug affordability with a provider may be helpful, but if the provider has limited financial navigation resources the patient has to figure out a different path.

Arguably one of the most damaging aspects of this current unresponsive scenario is the loss of confidence by patients toward industry health regulators, practitioners and care solution providers.

To better address the voice of the patient, a 5th “P”, called participation is needed. Specifically, we propose a direct “real time” collection of patient data by each/every stakeholder by allowing each stakeholder to invest directly with patients to receive their information. This process starts by recognizing that many new technologies with HIPAA secure features are available to effect such a business relationship. Such agreements will yield more real-time reporting of patient issues like cost, side effect, adherence levels, etc. and reduce the current time lag for obtaining this kind of direct patient feedback.

With sufficient available technology the key step to completing the new communications channel between patient and stakeholder is a business agreement between the parties. And to advance this relationship, patients need to receive incentive to participate and receive protection with terms that ensure that data is collected, protected and used as agreed upon. This type of business arrangement is very important to every patient, particularly those within under-served communities. Better serving these communities may have a leveraged return on investment for healthcare resources. Certainly, the complexity of developing formal agreements between industry stakeholders and “patients” is a BIG challenge but can we see patient data brokers in the future?

The wasted hundreds of billions of dollars and too many unnecessary deaths that occur each year due to improper medication adherence is a long term trend that needs new attention with new “regulation” that lessens the distance between patient and care provider.  Putting investment directly into the hands of the patient, and providing feedback directly to all industry solution providers allows the industry to better support and more quickly react to patient needs, in a more patient centric basis.

Notifius provides patient engagement management solutions that measurably improve patient adherence and accelerate reimbursement dollars through methods and procedures, such as the NotifiUs Quality Improvement for Oral Oncolytic Adherence (QIOOA) program.

@NotifiUs www.notifius.com 703 403 3133 Terry Wolters, CEO or [email protected]