Throughout much of history, doctors made unilateral decisions about their patients’ care. Patients had less access to medical information, and rarely questioned a doctor’s treatment decisions. In recent years, however, there has been a significant shift in the way medical decisions are made. Choosing treatment options is no longer the sole responsibility of a doctor; instead, patients today play an active role in decision-making and serve as their own advocates or work together with a patient advocate.
Shared decision-making (SDM) allows a patient to choose his or her best treatment plan by aligning various risks and benefits with his or her own preferences and values. SDM in medical practice can be described as an interaction between the patient and provider, which allows the patient to play an active role in making decisions about tests, medications, procedures, referrals or behaviors.
Decision-making aids empower patients and facilitate communication.
Patients struggling to navigate the complex healthcare system now have many resources at their disposal. The Dartmouth-Hitchcock Center for Shared Decision Making has been one of the leaders in empowering and engaging patients; with a website that contains a comprehensive database of interactive, decision-aid tools and online resources. In collaboration with the Informed Medical Decisions Foundation, this organization created free decision-support toolkits for primary health, specialty health, and training modules in decision support as a clinical skill.
Several other noteworthy sources of decision aid tools include the Agency for Healthcare Research and Quality (AHRQ), Ottawa Hospital Decision Centre (OHDeC), Ask Me 3, and the Mayo Clinic Shared Decision Making National Resource Center. AHRQ’s SHARE Approach is a model of shared decision-making that includes five steps to help guide physician and patient communication around treatment options:
- Seek your patient’s participation
- Help your patient explore and compare treatment options
- Assess your patient’s values and preferences
- Reach a decision with your patient
- Evaluate your patient’s decision
Although AHRQ’s training workshops and webinars are created for providers, patients can gain valuable information and realign expectations of their role in the decision-making process based on best practices.
OHDeC’s A-to-Z inventory provides a comprehensive, searchable database of decision aids by condition or medical topic for patients, parents and caregivers. This organization also provides research reviews, trainings and implementation-support resources.
Ask Me 3, on the other hand, is a tool that can be used by all patients and applied to any condition. The Ask Me 3 tool is a simple, one-page document that can be printed and taken to appointments, and encourages patients to ask their provider three key questions to clarify their principle health concern options for getting better:
- What is my main problem?
- What do I need to do?
- Why is it important for me to do this?
The Mayo Clinic Shared Decision Making National Resource Center offers a handful of shared decision aids including those related to cardiovascular conditions, diabetes, depression and medication choices such as osteoporosis and anticoagulation medications.
Importantly, any account of efforts to empower patients and improve healthcare quality through accessible and accurate information would be incomplete without noting the important work done by the Cochrane Collaboration. This international non-profit works with more than 130 countries around the world to share the most up-to-date, evidence-based research.
Each Cochrane Review focuses on a specific healthcare issue; such as cranberries for preventing urinary tract infections, exercise for depression, or pulmonary rehabilitation for chronic obstructive pulmonary disease. All the available evidence on that topic is evaluated and the findings are summarized. Reviews also include a “plain language summary” to make it easier for individuals outside of clinical and medical fields to interpret the results.
To date, the Cochrane Collaboration has published 10,256 reviews.
Patient advocates provide additional, real-time support.
If patients find they need additional support beyond decision tools, they may have the option of obtaining a patient advocate.
A patient advocate, sometimes also known as a patient representative or patient navigator, may be hired directly by the patient, appointed in-house by a healthcare facility, or may even be included as part of an employer’s benefits package. Some organizations, such as the not-for-profit Patient Advocate Foundation (PAF) provide services free of charge.
While a patient advocate’s role and level of involvement can vary, an advocate’s central purpose is to provide patients with support in meeting their healthcare needs.
Potential roles of a patient advocate include:
- Helping the patient understand his or her condition and options for care
- Facilitating communication between the patient and provider
- Assisting patients with obtaining support services, financial assistance and legal help.
Advocates may work only with the patient, or interface with payers, employers, case managers, attorneys, and anyone else who may have an impact on the patient’s care.
Shared decision-making makes choosing care more empowering and less overwhelming.
While the healthcare system can be overwhelming, it is important for patients to feel empowered and engaged when it comes to their healthcare. Organizations such as The Dartmouth-Hitchcock Center for Shared Decision Making, AHRQ, and the Cochrane Collaboration have been leaders in fostering and enabling SDM and continue to make important contributions in this area.
Patient advocates may also be an option for patients desiring additional assistance or support with their medical conditions. While the costs and services provided by an advocate can range significantly, the primary purpose of the advocate is to assist patients in getting the care they need and advocating on their behalf.
Through resources such as decision-aid tools and patient advocates, patients can be better informed, prepared, and supported when making decisions about their health.