You’re working with a patient who needs specialized care. How can you find the best resources to help them?
As a patient advocate, you may encounter situations where your client needs specialized care that is not readily available in your area or covered by their insurance. How can you help them access the best resources and options for their health and well-being? In this article, we will share some tips and strategies for finding and evaluating specialized care providers, programs, and services for your patient.
The first step is to understand the patient's specific needs and preferences for specialized care. What kind of condition, diagnosis, or treatment are they looking for? How urgent is their situation? What are their goals and expectations? What are their financial and logistical constraints? You can use tools such as questionnaires, checklists, or interviews to gather this information from the patient and their family or caregivers. You can also consult with their primary care provider or other health professionals involved in their care to get a clear picture of their medical history and current situation.
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The more rare/complex the needs, the less likely to be able to find standard/cookie-cutter solutions/resources, yet this patient-type is often in the most need of support. Not all patient support/advocacy groups are created equally, but many have experts, guidance, education and communities ready to help a patient needing specialized support. Often the experts of the field are drawn in yielding outstanding guidance. These groups also give guidance on when/how to talk to their team. Most have strict policies against giving medical advice, but often, it's the OTHER factors such as how to live with the condition, mental health, whole-person, QOL issues that long-term/complex patients need. Never estimate the power of community connection.
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In dealing with patients with complex needs and requiring high acuity nursing cares, it is best to obtain collateral history from the family to be able to formulate a nursing care plan suitable for the patient. For example, in patients with cognitive impairment and functional decline, it is best to involve the family with goal setting and to be able to provide a wholistic nursing care.
The next step is to research the available options for specialized care that match the patient's needs and preferences. To do this, you can use a variety of sources, such as online databases, directories, websites, reviews, or referrals. For example, the Agency for Healthcare Research and Quality (AHRQ) Directory of Patient Advocacy Organizations provides information and support for patients with specific conditions or needs. The National Center for Complementary and Integrative Health (NCCIH) Find a Practitioner Directory helps patients find licensed practitioners who offer complementary and integrative health approaches. The National Cancer Institute (NCI) Cancer Centers Program designates centers that provide comprehensive cancer care, research, and education. The National Institutes of Health (NIH) Clinical Center conducts clinical trials and studies for patients with rare or complex diseases. Additionally, you can contact your local health department, social services agency, or nonprofit organization to find out about local or regional resources that may be available for your patient.
The final step is to evaluate the quality and suitability of the options you have found for specialized care. You can use criteria such as accreditation, certification, reputation, experience, outcomes, costs, and accessibility to compare and contrast the different providers, programs, or services. You can also ask questions, request references, or visit the facilities or websites to get a firsthand impression of the quality and suitability of the options. You can use tools such as ratings, reviews, or testimonials to get feedback from other patients or advocates who have used the options. You can also use tools such as brochures, flyers, or videos to get more information about the options.
Once you have evaluated the options, you can present them to your patient and help them make an informed decision based on their needs and preferences. You can also help them navigate the process of applying, enrolling, or accessing the specialized care they have chosen. You can also follow up with them to monitor their progress and satisfaction with the specialized care they are receiving.
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In addition, it is crucial to provide ongoing support to the patient throughout the specialized care process. This includes helping to address any issues or concerns that may arise, providing additional information as needed, and acting as a point of contact for any additional assistance the patient may require. Maintaining open and transparent communication with the patient and their family is essential to ensure their needs are effectively and satisfactorily met over time.
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It’s important to present these options to the patient as just that- options. While patient advocacy surrounds the availability of options that benefit of the patient, the patient is the one who is ultimately responsible to decide what is best for them. This is a principle of patient centered medical care.
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Lever those with lived life experience, these are often the experts, especially in relataiton to resources that professionals are not aware of. Forums, focus groups and patient and public consultation. Too many professionals work in silos of believed expertise, when often those who have walked the path before hold the keys to unearthed resources.
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