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49th Annual Meeting

OWNING CHANGE: Taking Charge of Your Profession

The Rise of the E-Patient: How Pharmacists Can Be Involved

in this Digital Revolution

Timothy Dy Aungst, PharmD

Disclosure

I do not have a vested interest in or affiliation with any corporate organization offering financial support or grant monies for this continuing education activity, or any affiliation with an organization whose philosophy could potentially bias my presentation

Objectives

Describe the role of patient portals and the

new generation of E-Patients

Discuss the importance of patient portals

and online social groups on pharmacists

practice

Identify quality resources and tools to

assist E-Patients in becoming self-directed

Have you ever Googled a Health Concern?

Do you own a mobile device?

Source: http://www.pewinternet.org/2013/01/15/health-online-2013/ (Accessed May 10, 2015)

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Source: http://www.pewinternet.org/2013/01/15/health-online-2013/ (Accessed May 10, 2015)

How the battle cry of the E-Patient Movement came about.

‘Gimme my damn data’

Birth of an E-Patient

In 2007, Dave deBronkart was diagnosed with Stage IV Renal Cell Carcinoma.

Told he had only ‘months’ to live, he turned to the internet for help. Social Search.

He found an online group, that advised him of potential treatment options. Online

Support and Information.

He shared those recommendations with his oncologist at Boston’s Beth Israel

Deaconess Medical Center, who helped enroll him in a clinical trial based on Dave’s

inquiries. Incorporation of Information with a Clinician.

Dave survived. Birth of an E-Patient.

Source: http://www.epatientdave.com/about-dave/ (Accessed May 10, 2015) Source: http://www.ted.com/talks/dave_debronkart_meet_e_patient_dave?language=en (Accessed May 10, 2015)

What Saved His Life

“Well, my doctor prescribed a patient community, ACOR.org, a network of cancer patients, of all amazing things. Very quickly they told me, "Kidney cancer is an uncommon disease. Get yourself to a specialist center. There is no cure, but there's something that sometimes works -- it usually doesn't -- called high-dosage interleukin. Most hospitals don't offer it, so they won't even tell you it exists. And don't let them give you anything else first. And by the way, here are four doctors in your part of the United States who offer it and their phone numbers." How

amazing is that?”

-E-Patient Dave

In order to understand why the E-Patient Movement is taking off, we need to define an E-Patient, and the changing role of technology in society and healthcare at large that is enabling such a movement.

Welcome to the E-Patient Movement

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What is an E-Patient?

“E-Patients represent the new breed of informed health consumers, using the Internet to gather information about a medical condition of particular interest to them. The term encompasses both those who seek online guidance for their own ailments and the friends and family members who go online on their behalf. E-Patients report two effects of their online health research – ‘better health information and services, and different (but not always better) relationships with their doctors.”

-Tom Ferguson, MD

E-Patient Qualities

Why now?

Widespread adoption of mobile

technology

Wireless network growth

Implementation of EHRs and

patient portals

Adoption and utilization of social

networks and groups

Rise of start-up ventures and

access to health information online

Reduction in price of genomic and

personalized testing

Impact of Mobile

iPads, iPhones, Android, O My!

Who is using them?

‘Everyone’

• Your Kid

• Your Parents

• You

• Not your Dog

What are they used for?

• Social Media (Facebook!)

• Business (Who Loves Email?)

• ‘Photography’ (Instagram)

• Games (Angry Birds)

Let’s face it. Mobile is here and it isn’t

going away.

Rise of Patient Portals

What qualifies as a patient portal?According to HealthIT “A patient portal is a secure online website that gives patients convenient 24-hour access to personal health information from anywhere with an Internet connection”

Functions include:•View health records•See medication lists•View labs•Communicate with provider•Schedule appointments•View visit/discharge summaries•Download and complete forms•Make payments

Source: http://www.healthit.gov/providers-professionals/faqs/what-patient-portal (Accessed May 10, 2015)

The fact of the matter is that technology has allowed patients access to information they have not previously been capable of utilizing.

Do you use any of the following?

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Easy Genome Access

Source: http://blog.23andme.com/wp-content/uploads/2008/01/spitkit.png (Accessed May 10, 2015)https://www.23andme.com/ (Accessed May 10, 2015)

Getting your genetic data has never been easier, or cheaper. One startup company is making a business on taking your saliva and sequencing your genetics.

A $99 Kit.The kit is sequenced via the company’s personal genome sequence to provide genetic information to the the customer.

Status Flux.The FDA is limiting 23andMe currently bylimiting it’s a functions while undergoing review. However, there are numerous other companies and internationally providing these services.

A Potential Future?

Source: http://fitbit.expertproductinquiry.com/%5CClientImages%5Cforce_both_1600x925.png (Accessed May 10, 2015)

Do you own a health tracker or wearable device?

Wearable's & Digital Health

Welcome to the Era of the Internet of Things (IOT)Almost anything can be tethered or connected with each other, through the use of wireless and Bluetooth technology. This has gravitated towards trying to tie together multiple peripheral devices to smartphones.

The Pedometer Grew Up.Essentially we are in a situation where developers are trying to figure out exactly how much they can put on a users wrist. This includes devices that can measure vitals, track movement, and beyond.

Goes beyond what one can wear.While wrist mounted wearable's get the most attention, there are multiple other companies setting out to create digital devices that can do more and serve a greater niche in healthcare.

These advancements escalate what data E-Patients can collect and utilize.

Tracking Heart RhythmAlivecor allows users to measure and assess their heart rhythm with a one-lead EKG and determine status of Atrial Fibrillation.

Source: http://www.alivecor.com/home (Accessed May 10, 2015) Source: http://www2.withings.com/us/en/products/smart-body-analyzer/ (Accessed May 10, 2015)

Digital Body AnalyzerWithings produces a line of products that can measure and plot out multiple vitals and measurements.

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Source: http://www.applehealthkit.com/wp-content/uploads/2014/06/apple-healthkit.png (Accessed May 10, 2015)

All Integrated with a SmartphonePractically all digital health sensors are now being integrated with users’ smart devices (e.g. Tablet, Smartphone) and can then be tracked and shared with providers.

Despite the steady attention that mobile devices are attracting, there are limitations to the use of technology in healthcare.

Pitfalls and Limitations of the Internet in Health Care

What qualifies as reliable health information online?

Health Professionals can Google too, but we have better resources.Most healthcare professionals are members of institutions that subscribe to some form of regulated or high quality medical information to utilize for daily clinical care.

Pay walls limit information patients have access to.Journals. Health Information Services. Patients have to hop through a lot of barriers if they want access to any formal piece of literature.

As such, patients must look to free services that may be of questionable nature, or have a motive (e.g. financial incentive) to gravitate for free information for patients.

Problem: How do we get patients reliable health information, and who curates the information?

Current Solutions: Online health partners and health institutions and government support.

Source: https://www.google.com/webhp?hl=en#safe=off&hl=en&q=heart+failure (Accessed May 10, 2015)

Fallibility of Mobile

Patients may be drawn to mobile apps, but not all apps are equal.The FDA has released guidelines of mobile medical apps, but will not review the majority of apps, due to the sheer deluge in the number of apps available.

As such, many patients will be ultimately responsible for what apps they use to access medical information or use as a ‘medical tool.’

Sample CasesThe FTC has shut down several mobile medical apps in recent years due to significant interest in potential patient harm or misinformation:

In 2011, the FTC shut down 2 apps that purported to cure acne via the blue light from the iPhone screen.

In 2014, the FTC is pursuing apps that purport to identify melanoma on patients skin.

Limits of Patient Portals

One size does not fit all.While the current business trend is to implement EHRs, patient portals, and affiliated services into health systems, the ultimate issue becomes the significant information system fragmentation across the whole spectrum of healthcare.

Ultimately may complicate patient care and limit data access.Patients will have to jump through multiple barriers to access their data, especially if they are seeing multiple health systems, have multiple providers, and use different pharmacies.

Companies are trying to find a solution.Multiple organizations, both private and federal, are seeking a solution to help patients have better access to their data.

Source: http://healthit.gov/patients-families/your-health-data (Accessed May 10, 2015)

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What is the craziest health information you

have seen online?

Just because it’s online doesn't make it true. Right?

Some information is just plain wrong according to science.Issue with the internet is that almost anything can be posted and then be found. This includes information that may be medical in nature but utilizes unfounded science or data to make health recommendations.

Anyone can be an expert.As such, patients may be preyed upon, due to deficits in health literacy or overall knowledge of information gathering, and be susceptible to incorrect information which may negatively impact their health.

Patient Interpretation of Online Resources

We have established technology plays a role, but that there still needs some work done to improve it for patient use. How can pharmacists be a part of this process?

Why Pharmacists Have a Stake in the E-Patient Movement

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Let me tell you my biggest fear:

The day a patient is offered to be counseled and says that they can ‘just look it up’ on their smartphone and we as a profession just stand by.

We have a lot to offer and a lot to gain.

Patient Engagement.

Working with E-Patients can help expand patient interaction and trust between

pharmacists and patients.

Resources.

Pharmacists can utilize their clinical knowledge to help advise patients with questions

related to what may constitute reliable health information.

Push for Provider Care Status.

More exposure as patient advocates and resources as clinicians will help build

support for pharmacists seeking to expand services.

It’s good for business.

Why Should Pharmacy Care?

PharmacyHospital Department

s

Laboratory/ Diagnostics

Billing Department

Hospital Information System (HIS)

Primary Provider

Outpatient Laboratory

E-Prescribing

Source: Pharmacy Forecast 2015-2019 (Accessed May 10, 2015)

Importance of Pharmacy Involvement with Technology AdvancesIn the recent Pharmacy Forecast (2015-2019), many of the survey responses indicated that there was a large anticipation in the role technology would play in patient care and pharmacy roles and responsibilities.

Recommendations:

Patient Portals and Pharmacy.

“Move assertively to position the pharmacy department as a vital contributor to the

success of your institution’s Web-based patient portal. Among the elements of this

imperative are (a) ensuring that the patient portal supports communications with

pharmacists, (b) specifying how pharmacists will monitor the patient portal, and (c)

establishing performance goals that link pharmacist patient communications through

the portal with medication-related outcomes”

Integrated Staff.

“Ensure that your organization’s IT operation includes an appropriate number of

pharmacists and medication-focused staff to support the growing complexity of EHR

technology systems.”

Source: Pharmacy Forecast 2015-2019 (Accessed May 10, 2015)

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Recommendations:

Mobile Development.

“Participate actively in your institution’s initiatives related to patient and

clinician-focused mobile-device apps, including (a) advocating for oversight

of the use of medication related apps by the pharmacy and therapeutics

committee, (b) ensuring that pharmacists are involved on teams that

evaluate and manage medication-related apps (including assessment of

vendor business model alignment with your institution’s medication-

management goals), (c) developing an approved list (formulary) of

medication-related apps through multi-disciplinary collaboration, and (d)

developing a pharmacy-operated advisory service for patients and clinicians

on appropriate medication-related apps and information sources.”

Source: Pharmacy Forecast 2015-2019 (Accessed May 10, 2015)

Retail Pharmacies are Integrating with Digital HealthRite Aid has partnered with a text service to provide health information to mothers.

Patient Engagement and RewardsWalgreens has been the most progressive, using their services to not only support an active lifestyle but also expanding to partner with patients in treating chronic diseases

The E-Patient movement has made significant inroads into playing a role in healthcare, and has steadily crated some useful resources for use.

Resources for Patients

Source: https://www.patientslikeme.com/ (Accessed May 10, 2015)

Online Disease Oriented Support NetworkUsers can connect with patients with similar disease states and share their experiences and discuss their health conditions and what they have done for treatment.

Users have the option to share their day-to-day status, health updates, treatments, and what has and has not worked.

Data now incorporated with Walgreens.

Good reference for patients looking to join an online community, especially if focused on rare diseases.

Source: https://s3.amazonaws.com/betaboston-static-content/uploads/2015/02/FINAL-Walgreens-Image-for-2-18-15.jpg (Accessed May 10, 2015)

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Health Information Website by the National Library of MedicineSupplies curated medical information (e.g. drug information, disease information) for patients that is meant to be easily accessible at most levels of health literacy. Also links out to further health information websites, such as the Mayo Clinic and other organizations health information meant for patient purview.

Website is a good recommendation for patients looking for easily accessible and readable content on the web from a trusted organization.

Source: http://www.nlm.nih.gov/medlineplus/ (Accessed May 10, 2015) Source: http://participatorymedicine.org/ (Accessed May 10, 2015)

Non-Profit Organization Dedicated to Supporting Participatory MedicineOrganization has a lot of good information on the E-patient movement, and is a good place to see the large movement and focus behind getting patients and caregivers involved together

Website is a good recommendation for patients looking for broad jump-off point on resources. Leads to other blogs and recommendations.

Blog of the Society of Participatory MedicineUsers can browse posts and articles of relevance related to the E-patient movement, and find support and recommendations for reference.

Guest posts by E-patients relating their experiences and views or perspectives. Content curated by E-Patients such as E-Patient Dave.

Good reference for patients looking for a website where they can keep up on E-patient related developments.

Source: http://e-patients.net/ (Accessed May 10, 2015)

Journal of Participatory MedicineAn online peer-reviewed publication for the Society of Participatory Medicine. Topics range from communicating with patients to being more engaged between healthcare providers and patient interactions.

Material includes reviews, original research, case studies, perspectives, letters, and columns.

Good reference for those want a more scientific look at the E-Patient Movement.

Source: http://www.jopm.org/ (Accessed May 10, 2015)

Standford Med XSponsored by the Standford Medical School, Med X focuses on the redevelopment of medicine through interdisciplinary actions and initiatives.

Hosts multiple events throughout the year, including a conference focused on patient-centered innovations.

Invites patients and providers to conferences to work and talk together. Patients are encouraged to be speakers and share their experiences and recommendations on healthcare.

If you want to be involved in the E-patient movement, and want to come at it from an academic angle, this may be a good fit.

Source: http://medicinex.stanford.edu/about/ (Accessed May 10, 2015)

Online JournalPeer-reviewed journal focused on building ‘an interdisciplinary, health and social care journal focusing on patient and wider involvement and engagement in research, at all stages. The journal is co-produced by all key stakeholders, including patients, academics, policy makers and service users.’

One of the first journals to include patients and the wider E-Patient community as reviewers and members of the editorial board.

Source: http://www.researchinvolvement.com/about (Accessed May 10, 2015)

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Questions still remain on the E-Patient movement, such as how to increase interactions between pharmacists and E-Patients, and potential upcoming changes that may disrupt the movement.

Lingering Questions on the E-Patient Movement

I am an E-Patient. And I embraced Digital Health.

Diagnosis: Postural Tachycardia SyndromeTreatment: Dietary control and supplemental sodium chloride tabletsSocial Support: Twitter and PatientsLikeMeApps of Choice: Withings HealthMate (Track daily movement and Heart rate)

Thank you for your time! If you want to keep in contact, please email me at TDAPharm@gmail.com or via Twitter @TDAungst

Questions?