There are a number of reasons for the steady growth, most of them centered on the increasing size and complexity of medical centers, the decrease in time that most medical providers spend in the exam room, and the perception that medicine grows less and less personal.

Although the increasing availability of advocacy businesses is encouraging, not all patients, or their loved ones, have access to their services. These businesses are still most prevalent in large metropolitan areas, leaving a paucity of services for patients in other parts of the country. Furthermore, advocacy services aren’t free, and cost is still perceived to be a major barrier.

So what does a family do when they need help and a private patient advocate isn’t an option? Currently, they might look for help from a community program, do some online research, or turn to their family and friends for answers.

Pathfinder’s Virtual Advocate

With your help, there will soon be another option: Grab your smartphones, or go online, and find help from the Pathfinder’s Virtual Advocate (PVA).

The PVA is a library of short, targeted videos that address the most common medical challenges patients and families face today. Based on the experience and knowledge of one of the oldest patient advocacy businesses in the United States, the PVA provides solution-based information and support, the next best thing to having an advocate in the room.

Presented in clear, three-minute segments, the PVA will enable users to access video content whenever or wherever they need it. They can get helpful insights and information when waiting in an exam room, after seeing their doctor, in the hospital, or at home. Imagine having an “advocate in your pocket”, someone to coach you, guide you at a time when you feel most challenged, concerned, and in need of support.

Consider some examples:

A family member is calling you to tell you that they’ve just received a devastating diagnosis. They’re not sure what to do next. Are you confident about the best way to respond?
You’re leaving the doctor’s office and are unhappy about a referral your doctor just made for a procedure you’re not sure you really want. How do you revisit this recommendation with your doctor without being perceived as “difficult”?
You’re reviewing your medical bills from a recent hospital stay, and you’re certain that you’re being overcharged. Do you know how to proceed?

These examples highlight the reasons why current online information isn’t enough: patients and their loved ones aren’t simply looking for facts; they need immediate assistance in making the best medical choices possible and in determining the right course of action. They need a handy toolbox that’s at the ready, whenever and wherever they want to use it.

Here is how you can help

Pathfinder’s Medical is partnering with Health Tech Hatch, a new health-focused crowdfunding site that supports the growth of new technologies that will make health care better for all of us. Here is a link to our PVA project site.

We would like to extend an invitation to you to “join the crowd” to help make this video library a reality. We’re all looking for quick, inexpensive ways to improve health care, and this is a great way to do your part. No one knows when a health catastrophe may strike someone you know. Wouldn’t you like to have the knowledge that a virtual advocate is on your phone?

Rewards

There are many cool rewards being offered in exchange for your donation, ranging from early access to the Library of videos to the chance to be a “Virtual Advocate Movie Star” to lifetime membership to Pathfinders Medical and access to all current and future products (a great value!)

So, we hope you will help us achieve our goal by doing any or all of the following:

Contribute to the project (early and often!)
Send this blog to your family and friends so they can do the same
Send us your suggestions of videos you would like to see us produce first
Give us feedback on our idea

Then, inevitably, someone else from the audience will ask: “But isn’t that what my doctor is for? Isn’t that what the people at the clinic do?. Why would I have to pay for something like this?”

And that’s when things get interesting…

What most people don’t realize is that no matter how terrific the medical team might be, how well regarded the system, or how many support people are in the picture, a medical challenge can steal away the most educated medical consumer’s confidence and inject chaos into the situation. Even the most dedicated doctors, nurses and social workers can’t be at a patient’s side all the time, and they are constrained by the demands on their time and the barriers within their systems. And those systems are far more complex and challenging than most of us realize until we’re at their mercy. Given that we’re dealing with them at the time where we are less competent and resilient than usual, a situation can unravel at record speed.

Unfortunately, most of us don’t want to think about scenarios like these so we enter them completely unprepared. We cover our eyes and hope for the best, assuming we can rely on the people around us and figure it out as we go along. Unfortunately, as those people who have been through it before can tell you, it just doesn’t work that way.

Private professional patient advocates, like those on our staff at Pathfinders, are the answer to today’s complex and sometimes impersonal health care system. We are there to partner with you at your medical appointments, during treatment, at the hospital, and in your home. We represent each of our clients so that they receive the most individualized, appropriate and professional care available. We ensure you’re your medical bills are accurate and fair. We facilitate family communication and mediate difficult conversations. Finally, we make sure that people can look back at their medical experience without regret.

As I often say at those speaking engagements: even if you choose not to listen to me, listen to the people who have been there; they know what they’re talking about!

To this end, we’ve played with terms such as “patient advocate”, but none of the usual descriptions have felt quite right.  Only recently did we fully grasp the problem: we were incorrectly thinking of our work as a freestanding counterbalance to the current healthcare system, leading us to work in a reactive way. Now we see that there is a better approach, one that starts with the work of the medical team but then builds on it. In short, Pathfinders enhances and promotes what happens at the medical center in order to extend and embellish it for people at home.

To understand our approach, it’s important to consider the typical patient experience. Patients leave their doctor’s office (sometimes in shock) with a long list of instructions for next steps that often include diagnostic testing, referral appointments, and steps to implement at home. Patients are often confused and upset, and even with the best medical providers, they report that there is never enough time to address all their concerns, to ask all the relevant questions, to get enough reassurance. Furthermore, patients often feel alone with their challenges, and their fear, uncertainty or inertia can prevent them from successfully carrying out the plan.  Patients experiencing a medical crisis are essentially thrown into an ocean, and even if they have the boat they don’t know how to paddle it. It can be a terrifying and overwhelming experience.

The gap between the medical diagnosis and treatment is where Pathfinders provides such value. We help clients and their families move forward, in an individual and ongoing way, once they leave the medical center.  Furthermore, we provide these services without the usual system constraints. First, we are available whenever the crisis occurs: there are no extended wait times for our services. Second, we provide support without the challenges of busy office hours and overbooked schedules. Third, we don’t bring our individual point of view, but rather work to help our clients discover their own values are understand how they impact their medical decisions. Last, we devote the necessary time and effort to each client’s current situation and work through every part of the process so that they feel certain about their path toward optimal medical care. We do all of this in close partnership with each medical provider so as to make sure that all each and every factor is understood and addressed. And we work in the setting where most of health care actually takes place, in the comfort of each client’s home.

While it’s true that many of our clients are either seniors or the adult children who are helping them, we recognize that it’s all too common for illness to strike younger people. And while the ages and settings may be different, we know that the very same issues arise when parents deal with a child’s diagnosis. Parents need to make the decisions that promise the best outcomes for their children, to find the best health care providers to ensure optimal medical care, and to identify the right support systems to make the process as easy as possible. Therefore, Pathfinders can make an important difference by supporting the family to succeed in each of these critical steps.

Furthermore, our staff can tailor our services to fully meet the unique needs of parents. For example, our career coach can provide support in negotiating time off from work so as to be available at the hospital bedside.  Or, we can assist parents in finding housing near the treatment center during the time the child is hospitalized. Our staff is flexible and ready to step in to accomplish whatever needs our clients may express.

Finally, Pathfinders can provide a partnership to families that are navigating the choppy waters that often arise in dealing with learning differences or school-based challenges.  While these situations are not typically included under the umbrella of healthcare advocacy, we understand that parents who are dealing with these challenges experience feel a loss of control and related stress, and we believe we can apply our toolkit in order to identify solutions.  In particular, our skills in mediation and negotiation make us uniquely qualified to work in this particular setting.

As always, the first step for parents is to call us and discuss how we can help. Our ability to personalize our services according to your individual needs is critical in determining the optimal approach for Pathfinders in assisting your family.

There’s no doubt that at present, there is some overlap between the professions, as patient advocates continue to carve out their unique place in the health care delivery model. There’s also quite a bit of variability in terms of what individual service providers offer, so it’s hard to draw hard and fast lines between professions. However, patient advocates are most definitely emerging as a new kind of patient expert, and there are some general characteristics that distinguish them from other care providers.

To put it in a somewhat simply, patient advocates are patient experts who assist people dealing with a medical crisis by helping them to make good decisions, personalize their care, and use the health care system to their best advantage. They help patients to take an initial step back upon diagnosis so as to make sound decisions going forward. Once those decisions are made they help their clients identify options for getting their treatment in a way that works best for them medically, financially, and practically.

Patient advocates are often by a patient’s side throughout treatment, both at the medical visit and in the hospital. They are active in ensuring that a patient can comfortably navigate the difficult medical system. They focus on qualities such as engagement and empowerment, and they are concerned with ensuring that a patient feels prepared, informed and engaged with the medical process. In short, patient advocates ensure that the patient is at the center of the entire treatment process.

Nurse case managers focus on the more clinical aspects of treatment: they are concerned with lab values, medications, and treatment plans. They are often the ones who are involved in the nitty-gritty, clinical aspects of treatment, and can be the medical liaison between the physician and the patient. Care managers and/or social workers are primarily concerned with the implementation of the care plan, and their focus is logistical. They are often the ones to identify outside referral sources, to coordinate services and to identify community resources. Nurse case managers and care managers are both valuable partners not only to the patient but also to the advocate. They ensure that the patient gets all the treatment and services necessary.

Companies like Pathfinders Medical are unique in that we recognize the value of the each of these health care professionals, and we employ not only patient advocates, but case managers and care coordinators who work together to provide the spectrum of care that our clients deserve.  We don’t identify a specific population for our services, but rather focus on the skills that are always critical for anyone who is challenged by a medical crisis.

It may seem counterintuitive to some, this idea of needing someone to help us get ready to see the doctor, someone to go along to a visit. There’s no doubt that many of us are pretty sophisticated when it comes to understanding which questions are important to ask, which issues require most focus, which concerns need to be addressed. We’ve learned, however, and this is also supported by the research, that even the most competent patients often find themselves confused and overwhelmed when they are faced with an emotionally charged situation. If a medical visit brings up things that frighten or worry us, we are often unable to implement even our most carefully laid out plans.

Also, medical visits can be frustrating. We’ve all had the experience of sitting in a waiting room as the minutes tick by, or we’ve been late to an appointment because it was so hard to park and then find the right office. And most of us know what it’s like to get an appointment only to discover that we’re not comfortable with the doctor’s tone, or emerge after with the feeling that we didn’t get enough time at our visit.

The professionals at Pathfinders are experts at navigating the medical system, dealing with communication challenges, and at ensuring that the right issues are addressed at a medical visit. We understand how the medical center works, and we also know our patients and how to best help them get exactly what they want most out of their visit. We can act as mediators to ensure that each of our clients feels respected, as researchers to get information that is most useful going forward, and as advocates to get the reassurance that our clients are following the course that’s right for them. Finally, we can accompany those who don’t have a loved one close by, in order to help them feel less alone, and also to provide information to the family if needed.

We believe, along with our clients, that insurance should cover the cost of patient advocates, patient navigators, care coordinators, and financial organizers. We think that the insurance industry is most definitely on the wrong side on this one. It’s obvious to anyone who has had experience with a medical diagnosis that much of the cost of coping with a medical challenge happens outside of the medical center, resulting in additional expenses on top of the ones already accrued there. And we also believe that, with more research leading to better evidence about improved outcomes, the insurance companies will come to understand this and eventually cover our services. In the meantime, our challenge is to offer our clients the right services, ones that have the potential to pay for themselves in the long run.

Here’s the good news: many of the solutions that we offer will reduce one’s overall cost in the long run. For example, our hospital-to-home transition program will help to ensure that once someone is discharged from a medical setting, they are able to remain at home, reducing the cost of readmission. Another example is our visit preparation service; having a nurse accompany the patient to the medical visit ensures that questions and concerns will be addressed appropriately, reducing the need for more visits. Finally, our decision support service decreases the likelihood that patients will need to continually search for medical providers and new services. Once patients are comfortable with their treatment choices, they can focus on the treatment itself.

Of course, the bottom line is that some of our services will end up costing our clients. Ultimately, there’s no way around that. We’re convinced, however, that what we offer is of great value: knowing you did all you could to deal with your medical crisis is worth a lot, and there’s a whole lot of value in being able to look back and feel at peace.

Patient Advocates are private individuals who help people get information, find good medical providers, handle challenges both in the medical setting and with insurance providers, and obtain support in their communities.

Patient Navigators, on the other hand, typically work within the medical system, and their emphasis is on helping patients get the most of that system from the best sources within it. They are there to guide you through the process with the personnel and resources at hand.

Of course, there can be lots of overlap between the two, and what is provided can vary widely. Furthermore, the professional backgrounds and training of these individuals is also diverse. Many advocates enter the field after dealing with their own medical challenges; others use their professional training and transition from their prior work as nurses and/or social workers.  Some navigators are personnel who have gained expertise by working in that system, others are nurses who specialize in a particular aspect of medicine and who complement the care that physicians provide.

What’s really important is not the name of the service or who does what: what matters most is finding someone who can make a medical diagnosis less stressful and more personal. At Pathfinders we focus not so much on what the process is called, but rather on how we can assist you in dealing with your medical challenge so that you can look back on the experience without regret.

Sometimes these conversations run deeper, and people take the opportunity to tell me more about their experiences. Often, someone brings up the issue of regret. They may mention a treatment choice that now seems like the wrong option, or perhaps their overall dissatisfaction with their medical team, or disappointment about the road not taken. When I ask about why they think these things happened, people tell me that they felt rushed to make a decision, were too emotional to think clearly, or were completely overwhelmed and unable to maintain any engagement with the process. The bottom line is that it’s not uncommon for people to look back at a medical challenge and wish that they had handled it differently.

From these conversations, I’ve learned that regret is too often an unfortunate consequence of many people’s medical experiences, and it impacts them in a number of ways:

1. Since it’s difficult enough to move on after a health crisis; a lingering sense of regret, or doubt, can lengthen the process. People report that there’s not much closure if one continues to play “what if?”
2. If a patient experiences a recurrence, and they regret their prior decisions, they can end up blaming themselves for their current health condition. That kind of process can lead to depression, which in turn can lead to less than optimal health outcomes.
3. Relatives can experience profound guilt if their loved ones don’t get the care they deserve, especially if they have poor outcomes. Regret about the decisions made for those we love can lead to painful memories, sometimes lasting a lifetime.

What I know now is that regret doesn’t have to be part of the equation. This is the best reason for the existence of an organization like Pathfinders. Given the opportunity, we can help our clients make decisions and find solutions that enable them to look back on their choices with the knowledge that they did exactly what was right for them. We believe that with knowledge, support, and the option to make informed decisions, our clients will not only get the treatment they deserve, but will also gain something else of value: peace of mind.