Being a Proactive Patient in a Challenging System

I thought I’d offer some thoughts on the current state of healthcare, and how you, as a patient, can take an active role in ensuring you get the best care possible with navigating your injury, illness, or chronic condition. With access to care becoming more limited and dealing with longer wait times for almost everything, staffing shortages, and healthcare worker burnout at an all time high, the system is more challenging than ever to navigate. Especially when it comes to getting the best possible care within a reasonable timeframe. Although a lot of what we are experiencing is out of our immediate control, advocating for yourself— ensuring that your voice is heard throughout your experience as a patient– is one of the most effective means of achieving the best outcome possible for yourself within a strained system. Furthermore, self-advocacy benefits not only you the patient, but also all involved with your care, including your care providers as well as your greater community. 

Lately I keep finding myself in appointments where I’m left listening in bewilderment as the person in front of me recounts the colorful journey that led to them eventually ending up booking in for physio; referrals that were overlooked, months of uncertainty while sitting on waitlists, breakdowns in communication, rushed discharges from in-patient care, and some of the few common situations that come to mind.

Other times, when discussing more chronic medical conditions, I hear stories of long struggles to be taken seriously, long waits to get important imaging or lab tests done, and difficulties to get referred to the appropriate specialist for an accurate and official diagnosis.

Then there are those with misdiagnoses of common and easy-to-spot conditions, concerns being left unaddressed or invalidated, being recommended to private facilities for questionable treatments with little evidence to support them, or referrals for numerous injections before trying basic conservative treatment options. Then there are the patients who seem to just fall through the cracks and being left with no answers when their problem is a little more complex, but not necessarily urgent or life-threatening.

Before going any further, the last thing I want to imply is that family physicians, nurses, specialists, and allied health professionals like physiotherapists, and administrative staff, especially all of those in the public healthcare sector, are to blame for the vast majority of these patients' experiences. Healthcare workers more than ever could not be more deserving of our support, compassion, and understanding. Today they face just as many challenges as patients; excessive patient volumes to care for, staff shortages, rising costs and limited wage growth, constant restructuring, and a system experiencing an ongoing sharp increase in demand over the past few years.

No matter how hard working, compassionate, and altruistic their intentions are, many healthcare providers literally cannot cover everything that is expected of them nowadays, but still they strive to do their very best for the communities they serve. It is critical that as patients in today's system that we do not forget that self-advocacy requires respect and understanding for the people that are here to help us, and the experiences I've listed above are most often the result of a struggling system, and not any individual working within it.

Back to our main point: more often than ever, I am coming across people who have been suffering for some time from conditions or injuries that could have been identified and successfully managed or resolved with basic due diligence, and patients feeling lost in a system with long wait times and limited access. They could have avoided a lot of unnecessary pain, frustration, and worry with a few relatively simple measures and/or timely care. It has left me to consider, given the increasing frequency of these experiences, what can you do as a patient to keep yourself from getting lost in the thick of it?

There is one common thread that I do see amongst quite a few of these experiences in my work as a physiotherapist, and despite the current state of healthcare, this isn't the main factor that led to them to feeling lost or stuck. Although it doesn't apply to all of them, in too many of these cases, I can't help but wonder if things would have been taken care of much more appropriately and efficiently if they had just spoken up more and had taken a more proactive approach as a patient, rather than taking a passive role, i.e. not following up on appointments and referrals, not speaking up more during appointments, or giving up once they encountered barriers to getting the right treatment. Yes, the system is strained, but taking the right measures can mitigate the overall impact of this strain on your care. 

So, with that all said, what are some ways you can take as a patient to make sure you being proactive and getting the best care possible in today’s challenging healthcare climate? 

• Educate yourself – While some providers groan at hearing ‘I did my own research,’ we shouldn't discredit the fact that patients now have access to more health information than ever. In most cases, no one will invest more time into understanding your issue than you. Stick to credible sources from trusted, well-established and recognized organizations; peer reviewed research (systematic reviews and meta-analysis are easy to access from Google scholar), clinical guidelines, and expert consensus. Look for articles with high numbers of citations and published in journals with high impact scores. Avoid anecdotal stories and claims from people with questionable formal training in your area of concern.

  
  

• Be Confident and Collaborative – Healthcare providers want to know what you’re thinking and feeling. Your opinions, lived-experience, and comfort level is always relevant and invaluable when it comes to making decisions about your care. This means asking questions, challenging assumptions, exploring alternatives, sharing your experiences openly. Consider every interaction an opportunity to practice improving upon your confidence in healthcare settings. In short, speak up! No one expects you to recount knowledge or data like a seasoned expert, and healthcare providers should be expected to have an interest in and respect for what you have to say. Have a list of questions on hand at your appointments. Take time to reflect on the opinions of those you are working with, and meet them with respect and consideration.

  
  

• Be Prepared and Proactive - Follow up on referrals, and don’t delay booking appointments. Take notes and keep records of your current symptoms, investigation reports, treatments, and progress on hand to discuss with your healthcare provider. Ask for your providers’ thoughts on a variety of treatments, or if your doctor thinks specific scans or investigations are worth considering. When booking lab work, call around to look for an earlier appointment.  If you are left feeling invalidated or overlooked by a healthcare provider, let it be known in a respectful way, and if it still doesn't work out, look for a second opinion if possible. If you're wondering if physiotherapy might help, ask for that referral, or even call a physiotherapist directly to see if they're qualified to treat or manage your condition.

  
  

• Be Open to Reevaluating Your Thoughts and Approach to Care  – Given the amount of misinformation out there, the complexities of so many conditions and injuries, and with new research always emerging, many patients do in fact get it wrong, unfortunately, when it comes to self-diagnosis and choosing the best course of treatment. Getting too caught up in one possibility and having a rigid belief system around your situation most often creates barriers to better care rather than protecting you. Remember that the healthcare professionals you are working with are here to offer honest guidance based on a wealth of knowledge and experience. Recognize each provider's extensive depth of knowledge, training, and experience in their respective field, respect their time and space, and remember that patients don't always get it right either, even when they sometimes feel certain about their beliefs. 

  
  

• Listen to Your Intuition – As much as healthcare should be primarily grounded in logic and reason, at the same time, don’t neglect your own internal compass when it comes to making decisions about your health. That said, try to differentiate between logical concerns and anxiety-driven worries. Open communication with your provider is key to feeling heard and understood. Don’t be afraid to speak up if you have a sense that something is being overlooked, and voice your questions and concerns rather than letting them live on as worried thoughts long after your appointment. Showing respect for your healthcare provider doesn't mean you have to agree with everything they have to say, and if you truly feel that your gut is trying to tell you something, make sure you explore the issue further. 

  
  

These steps, of course, will by no means will fix the situation we are finding ourselves in lately with healthcare; wait times for appointments, imaging, lab work, and surgeries won't suddenly shrink down because of your ability to speak up and be heard, or by your efficiency in booking follow-ups, and a second opinion is not always easy to access or readily available to everyone. That said, by emphasizing a more proactive approach by considering the above steps, you can focus on what is within your own power as a patient rather than what isn’t, achieve the best possible outcome for yourself given the current circumstances, and get the most out of your healthcare experience.

Remember: never hesitate to speak up. Approach your interactions with healthcare providers with curiosity, respect, and a grounded mind. Recognize that professionals have extensive training and experience and are ultimately here to help, but don’t forget that you, the patient, have the knowledge that comes with experiencing your issue first hand. Work towards using your voice as a patient in every interaction with your care providers that matters.

As the physiobox team, when it comes to recovering from pain and injury, improving your overall health and fitness, or managing a chronic condition, we strive to be your ally and a strong source of support in your journey. If you have questions about pain and injury rehab, improving your general health fitness, or any other issue potentially within the scope of our practice, just reach out—we’re happy to provide guidance and support, and for anyone feeling a little lost in it all, a sense of confidence and clarity.

- Mark