How do you include diverse patient perspectives in advocacy?

Early in my career, I met Maria, a middle-aged woman from a culturally rich background, in a psychiatric clinic. Her primary language was not English, and her cultural beliefs about mental health influenced her perceptions of it. To advocate for Maria, I had to understand her unique lens and appreciate her experiences. I had to realize that her healing journey would not be the same as anyone else's. I had to involve her in her care and value her unique perspective. I learned that it's important to understand the unique experiences of each patient and to involve them in their own care. When we truly listen and engage diverse voices, we empower patients and enrich our understanding of healthcare

One thing I found helpful is putting myself in a "state of unknowing". Sometimes we tend to enter in relationships with our patients bringing in our clinical knowledge, perceptions, assumptions and most times, our culture. All those may be different with each patient. So why don't we exchange places with our patients for once. Be hungry for information, be the less knowing party which then sets the stage for active listening and authentic interest and concern. Only then when we can learn what really matters to them and how to be the best advocate they'll ever have.

Being an advocate for diversity is easy and rewarding when you love your work. Early on in my nursing career working in labor and delivery in a busy tertiary center, I experienced two scenarios that proved just how rewarding accepting cultural diversity can be. For one young woman who would not accept a male doctor, did not want her spouse in the room, I took the place of the mother-in-law in her country who she would have delivered with had she been there. With no female OBs available, a shielded drape hid the male doctor delivering her. Secondly, a man presented with “painful contractions.” He was treated with respect in the admission, care and discharge process - warmly thanking staff for care. Acceptance, flexibility works!

The journey into advocating for diverse patient perspectives begins by acknowledging them. We must delve into understanding our patient population's unique characteristics: age, gender, racial and ethnic background, cultural heritage, language preferences, religious beliefs, socio-economic status, health literacy, and even their health conditions. In the realm of patient advocacy, to truly engage means to actively invite patient's opinions and feedback. It isn't about dictating the healthcare decisions to patients; it's about listening to their voices, discerning their emotions, ascertaining their concerns, and valuing their beliefs.

We have to have self reflection and understand that we all have biases based on our cultural upbringing and values. The first step is in acknowledging our own potential biases to have self awareness and help identify other biases in our organizations.

In my experience, I’ve learned to ask the patient what they are trying to achieve and ask how do they think I can get them there. Sometimes letting a patient lead their care allows them to feel the decisions made are implemented by them and that you are truly trying to help them in a way they feel is feasible. I’ve created some trusting relationships in this manner and was able to also provide my feedback on best-practice decisions with patients. They tend to lean on our expertise to guide them primarily but you are providing them options in care when they give their suggestions on what care looks like.

Once I had a patient named Sarah who was struggling with severe depression. She had seen many doctors and tried many medications, but nothing seemed to help. She felt like her voice was being drowned out by medical jargon and medication changes. But when I took the time to listen to her story, I learned that her depression was rooted in complex trauma and loneliness. With her permission, I worked with her to develop a treatment plan that addressed her emotional needs as well as her medical needs. Sarah's story is a reminder that each patient has a unique story to tell. By listening to patients and understanding their perspectives, we can provide better care that is truly patient-centered.

One thing I've found helpful in patient care is engaging by listening to patients. They each come to us with a previous health care experience, either through a loved one, or their own. Listening to concerns and what they may be feeling as well as their beliefs/practices is important to providing the appropriate care as well as the patients trust in the health care system. If a patient is involved in their care decisions and care plan, they are more likely to comply and have a better outcome.

I agree listening is very important but it cannot be just one member of the healthcare team that listens. I so often have clients express that “you are the first person to listen” and I think the barrier is time. Doctors especially do not take the time to listen because they just do not have it, to many patients to see in a day leads to rushed visits without the time to listen.

Our duty as patient advocates goes beyond mere communication. It's about fostering a two-way dialogue built on trust and understanding. It's vital to use language that's easily understood yet not oversimplified and ensure that the information relayed to the patient is comprehensive yet digestible.

We must listen to patients' stories and understand their unique experiences, cultures, and beliefs. This helps us to provide more personalized and effective care. For example, one patient may benefit from medication management, while another may need emotional support or therapy. By listening to patients, we can better understand their needs and create a treatment plan that is right for them. We must also be respectful of patients' choices and preferences. This means giving them a voice in their care and allowing them to participate in decision-making. As they say, "Listen to understand, not just to respond."

Patient advocacy, much like healthcare, should be a realm of equity. As someone passionate about equality, I've seen how tailoring advocacy to individual backgrounds and challenges is pivotal.

As a Latina who worked in the US, I would say that equity and diversity for me starts with the availability of valuable information in other languages than English. One of the first things that a patients do when learning for the first time about their diagnosis is to Google it. In some cases there is some info in other languages, but in so many other cases the information is not only difficult to find but also not intuitive neither friendly.- Dear advocates, we can and need to do a better job there, to facilitate the patient journey into valuable information that can impact sooner into people's quality of life. Access to clinical trial information, treatment options, patient support services. If I can be of any help, I am here for it.

I once worked with a patient named Lena who had faced profound adversity. She grew up in a community where mental health was stigmatized, and her family had concealed her struggles for years. But Lena's story became a powerful tool in our advocacy efforts. It helped us to illustrate the importance of cultural competence, destigmatization, and community engagement in mental health care. Every patient has a unique story to tell. By listening to and learning from these stories, we can create a healthcare system that is truly equitable and inclusive.

Engage and Listen: The first step is to actively engage with patients from different backgrounds and communities. Listen to their experiences, concerns, and suggestions. This can be done through focus groups, surveys, or one-on-one conversations. Create advisory groups or committees that include patients from various racial, ethnic, socioeconomic, and cultural backgrounds. Ensure that these groups are representative of the population you are advocating for.

Advocacy for diverse patient perspectives doesn't end at considering their unique attributes; it demands equality. We must commit to providing all patients non-discriminatory, equitable access to quality healthcare services, irrespective of their background. To ensure our advocacy efforts deliver the best for each patient, we should continuously evaluate and identify areas of improvement. We need to measure the impact of our advocacy initiatives, gather patient feedback, understand patient experiences better, and adjust our strategies accordingly.

I once had a patient who was struggling with severe anxiety. We initially tried conventional therapeutic approaches, but they weren't effective for her. When we evaluated her experience, we realized that she needed a different approach. We invited her to participate in a focus group with other patients who had similar conditions, and we also included a patient advocate to make sure that everyone's voice was heard. We can't just assume that our current approach is working for everyone. We need to be open to feedback and willing to change our strategies when necessary.

The article highlights the importance of including diverse patient perspectives in advocacy, especially for patients with diverse gender identities. It provides some helpful tips on how to advocate for these patients, such as reaching out to patient groups, holding focus groups, using plain language, being respectful, and advocating for policies that promote equity and inclusion.

Lastly, never stop growing as an advocate. This requires commitment to constant learning - seeking new knowledge, gaining new insights, attending workshops and webinars, and implementing newly learned strategies and tools into practice. By inviting every voice to be heard, we champion a future in healthcare where each one of us has an equal opportunity at better health outcomes.

We need to start including more women and pregnant patients in healthcare strategy, research and development. So much of our research “accidentally” includes pregnant patients. Even in the Covid vaccine trials we needed to advocate for these individuals to be included. We can’t help patients, or improve maternal mortality, if they’re always going to be the after thought.

Let's say there is a campaign to improve accessibility in healthcare facilities. To include diverse patient perspectives, advocates would seek input from individuals with different disabilities, such as those who use wheelchairs, have visual impairments, or have hearing difficulties. By actively listening to their experiences and challenges, advocates can better understand their needs and advocate for changes that address their specific concerns. This approach ensures that the advocacy efforts are inclusive and representative of the diverse patient population, leading to more effective and impactful outcomes.

It is an exciting topic that is very relevant to our environment today. Especially with the different genders one can choose to become. How does one advocate for patients who do not fit into their moral and spiritual beliefs of gender identity? It all comes down to ethics, research, and incorporating the findings into the organization's vision and policies. To advocate for their patients, healthcare workers must suppress their feelings and beliefs and do what is ethically suitable for them. Policymakers now must change or add to policies, conduct surveys, and research for better understanding. The nursing and medical practice should include gender diversity in the curriculum to educate and encourage advocacy.

In my experience asking a client or patient “what did it take for you to get to me today” is eye opening This question can uncover transportation issues, food insecurity, childcare hardships. It can reveal house less mess, unemployment, micro aggressions they are facing. Knowing the answer to this simple question, and not making it part of small talk can reveal so much that you can take in account on being a proper advocate.

Don’t forget to support their needs to participate. Invest in removing their barriers whether they are financial, social, or physical. Travel vouchers, stipend for their time, even childcare, are a few examples.