HOW TO FIND AND BUILD YOUR HEALTHCARE TEAM

You have cancer, so you will need to put together a medical team to consult with and guide you through your treatments.   We cannot underscore how important is the selection of your team, who you decide to have as your teammates will make a difference in both your potential lifespan and in the quality of your life (QoL).

To ensure that you do have the best possible team you will need to use an organized and deliberate process.  Nothing short of this type of method should be acceptable to you considering the high stakes involved, your life.  Unless your cancer is so aggressive and out of control that you don’t have a second to lose (which is rare) you should take the necessary time to ensure that you assemble the best team possible to treat your cancer, given your personal needs and quirks.

You should never just accept a healthcare provider because another doctor, a family member or a friend recommended them.  These recommendations are important, but they need to stand up to your rigorous evaluation, your process and if they don’t then they should not become a member of your team.

To begin the process, the first thing you need to do is gather a list of potential medical providers. Create your list by reaching out to all of your doctors, not just the doctor who has given you the cancer diagnosis, and ask for their recommendations.  When they do provide you with a suggestion:

·     Ask them precisely why they are recommending this healthcare provider. 

·     Find out if they have worked directly with the provider they are recommending? If not, why are they making the recommendation?

·     Ask if they have other patients who are being treated by the provider they are recommending?  If they do have other patients, request that they reach out to these other patients and ask for permission to have you contact them directly to discuss their experiences with the provider as well as with having cancer.

·     Find out if they have heard the provider speak at a professional meeting or read their research?

 Next, ask members of your family and friends, who you trust sharing your diagnosis, if they have any direct experience with a provider who might be treating patients with a similar diagnosis. 

·     You should discount indirect recommendations like my friend Susan saw doctor so-and-so and liked the doctor unless you can also follow-up and speak directly with Susan. 

·     Ask why they are recommending this doctor.

·     Ask about the doctor’s communication style.

·     Inquire about the actual time spent in the examination room, if the exams were rushed and did they get the time needed so that all their questions and concerns were adequately answered.

·     Did the provider seem knowledgeable and when they did not know an answer were they willing to do research?

·     Ask about the provider’s follow-up when they said they get back with any information or explanations that required additional research?

·     Find out if the provider offered alternatives and thoroughly explained, in simple language, the pros, and cons of the recommended treatments and the alternatives?

·     Does the provider encourage patient and family questions?

·     Ask if they felt a positive rapport with the provider and were able to comfortably ask any question they had despite the sensitivity of the topic.

·     How was their bedside manner?

·     What happened when they called in or sent an email with a question or with a medical problem? How long did it take to get a response and who responded?

·     Ask the most important question, would you see this provider again if you were diagnosed today, why or why not?

Do a web search and try to find other patients who have a similar diagnosis.  To do this try and use the name of the type of cancer and look specifically for advocacy organizations that work with your particular cancer.  Often these organizations can connect you with other patients either directly or through a support group or a program. 

You can also search for local face-to-face or online support groups where you can meet other cancer survivors with your type of cancer.  Reach out to them and ask them about their experiences with specific health care providers, medical institutions and, of course, ask them whom they have on their team.  Ask these patients all the same questions you asked the members of your family and friends (see above).  

The US News and World Report Doctors publish a free searchable database of top doctors, and Castle Connolly has a top doctor rating service which has a small monthly fee to access (they also publish The Doctor’s Book annually). 

Check the rating sites like Yelp, ZocDoc, HealthGrades, Vital and RateMDs. When reading these reviews remember that in most instances the people writing the reviews are usually those who have had an extraordinarily good experience or an extraordinary lousy experience.   These reviews are often light on the ordinary experiences.  These sites can also contain disguised ratings from disgruntled employees, ex-spouses and friends or they can have inflated reviews from current employees or even the doctor.  

Another excellent source to use to develop your list of potential health care providers is to go online to the local hospital’s website and perform a search for a doctor stipulating specific cancer for which you are seeking a medical provider.  This method can be very fertile, especially if you are in a larger urban area.  If you live in an area that has more than one hospital or medical facility search all of them.  Many hospitals now ask that their patients to rate their experiences, often these evaluations are available online.  

Looking at the research and the publications of a potential clinician can help you better understand their expertise.  Searching the PubMed site is an excellent way of generating potential clinician/researchers for your medical team.  When you go to PubMed search for your cancer, you can also add the search criteria specific to the disease stage and the city in which you live.  You can also use PubMed to better understand a clinician’s area of expertise by searching the names of the clinicians you have already identified and seeing what they have published.  Remember, not all excellent clinicians do research so don’t assume that your inability to find a doctor’s name means that they are not a top-notch provider. 

Given how important the selection of your health care team is to your future, don’t narrow your search to a small geographic area.  You should be willing to get into your car or on public transportation to be sure that you have the best team.

Next, take this list and make a spreadsheet or some similar document.  List each name, their contact information, and the insurance they take (call their office to confirm, don’t rely on the information on the web as this can change), unless, on the unlikely chance, you can self-pay. 

Now, delete the providers who do not take your insurance if you are unable to self selfpay, cancer treatment is costly.

Next, take the names of the remaining providers and add the following information to your document:

·     The critical comments and feedback that you have been given from all your research. 

·     Add the names of the institutions or hospitals where the doctors are affiliated.

·     List the doctor’s credentials, including the Medical School they attended, where they did their Residency and Fellowships, State License information, and their Board Certifications.

·     Find out if there are any legal actions brought against the doctor or the medical facility (see How to Find Complaints Against a Doctor or Hospital)

·     Check the community rating of the doctor and their affiliated hospitals (see How to Find Complaints Against a Doctor or Hospital)

 ·    Find out if the doctor also does research.  If they do, confirm that the research is relevant to your cancer. You can do this by “Googling” their name and publications.  You can quickly gather an understanding of their interests by reviewing the titles of their publications.

·     Do not discount a doctor if they do not do research.  A good clinician does not have to be a researcher.  However, clinician/researchers often are more aware of the newly developing options.

·     If you prefer a provider of a certain age, gender, sexual orientation or language proficiency eliminate any names from the list that don’t meet your expectations.

Once you have created a list go through it and narrow it down to three or four providers who seem to be ranked the highest.  Then get on the phone with their offices and make an appointment to see them for an initial consultation.

When you call to set up an appointment pay attention to:

·     The greeting and response you get from the receptionist.  This greeting will often reflect the attitude of the provider.  

·     When you arrive for the appointment take note if the waiting area is clean and orderly.

·     Observe the attitudes of the people at the reception desk, do they answer a ringing phone or let it go to voicemail

·     Note how pleasant (or unpleasant) your greeting is when you check in for your appointment. 

·     How long do you wait before you are brought into an examining room?

·     How long do you wait in the examining room?

·     What is the attitude of the nurse or the aid when they take your vitals

·     Are you greeted and treated with respect? 

·     If you do have to wait, are you kept informed about your status and the reason for the delay? 

When the doctor does come into the examining room:

·     Are you addressed as a person and accorded proper respect?  

·     Do you feel that you were given the time you needed to have your questions and concerns thoroughly discussed? 

·     Ask about the doctor’s policies about returning phone calls and emails in between regular office visits.  Find out who will be responding to these calls and within what time sequence.

·     Ask if the provider will be open to considering your suggestions as well as alternative therapy ideas that you bring to the table.  Will they consider utilizing “off-label” treatments?

·     Will the provider encourage and support you to become responsible for your own medical decisions, or will they chafe and insist that only they know what is best for you?  

·     Ask about their policy about tape recording your appointments (see Managing Your Healthcare Team)  

Once you have seen all the providers on your short list write down the pros and cons you saw with each of them.  Be honest, but be fair in your evaluations.   You will be surprised; usually, one provider will rise to the top. Don’t forget to consider your “gut” response to a provider, it often a great measure of what will be best.

There are some limitations to this model of creating your medical team. If you are not very wealthy, your insurance status will probably need to be considered as you create your medical team. If you do not have medical insurance, you will be very limited in your choices, relying on public facilities.  

If you do have insurance, the type of insurance will have a role in the development of your team.  If your insurance is an HMO, you will not be able to get any insurance coverage for doctors that are not on the HMO’s list of providers.  If your insurance is a PPO type you will have a more comprehensive list of possible doctors who will be covered, however, there will still be doctors who are outside of your network or who do not take any insurance.  

If you receive your medical care from the Veterans Administration (VA), you will also be limited to the clinicians who are working in the VA system. 

We strongly urge, if you are able, that you switch your insurance coverage to a better insurance plan that has a broader offering of doctors that are specialists.  This would include moving from an HMO to a PPO plan and for people relying on the VA consider using your Social Security Benefits (Medicare) if you qualify.  

You might have to wait for the next “Open Enrollment” period, but you should remember that insurance companies are not permitted to turn you down from coverage or raise your premiums because you have a pre-existing condition. 

The other limitation you might face is that some of the doctors you are most interested in considering for your team may not be taking new patients. If you face this situation, the best approach would be to approach the doctor with a reference from another doctor, especially one who works in the same institution.  If possible, ask the referring physician to make a phone call to the potential team member you are considering. 

Remember; once you have decided on a team member, you can always change in the future.  These decisions are not chiseled in stone; they should be fluid.

Always Go to The Best, It Will Make A Difference