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Patients are taking an active role in developing relationships with all stakeholders within their healthcare environment.
Over the past several years, the relationship between pharma companies and patients has garnered much of the industry’s attention. But as patients become more empowered, engaged, and experienced in managing their own healthcare needs, they are forcing other stakeholder groups to develop new ways to interact with them. From physicians to payers, to patient organizations, to other patients, the collective voice of patients everywhere is beginning to incite a slow evolution to the patient being at the top of the healthcare decision-making hierarchy. This shift is altering the way all stakeholders should and, are, engaging with patients.
Pharma companies are one of the key stakeholder groups that is moving slowly toward better interaction with patients.
According to a study by Accenture, Allergan is one such company that is connecting with patients in a meaningful way. Through a collaboration with the American Migraine Foundation, Allergan launched an interactive awareness campaign Frames of Mind, which aimed to promote awareness of the impact of migraines on people’s lives by asking patients to submit original artwork depicting how their symptoms affect them. Another initiative is UCB’s work with Parkinson’s UK on two patient engagement workshops looking at outcome measures and clinical trial design. The workshops found that while researchers had been looking at helping with tremor or bladder problems, what patients really wanted was help slowing down the progress of their disease. Another company, Horizon Pharmaceuticals created a Patient Council to bring a rare disease community together through education.
Olivier Chateau, cofounder and CEO of Health Union, suggests that pharma companies need to view physicians and patients not as two separate audiences anymore, but instead engage with each sector with similar strategies.
“With patients becoming more in charge of their own healthcare, it is imperative for pharma to transfer some of the approaches and strategies it has long used to engage with physicians about treatments over to patients in a patient-friendly way,” Mr. Chateau says. “Traditionally, pharma companies have looked at physicians and patients as two different audiences, with different needs. Pharma companies engaged directly with physicians and gave them the tools they needed to convey the benefits and risks of specific treatments to the patient.”
Today, the power of expert knowledge that once solely belonged to physicians now also belongs to patients. Patients are increasingly being recognized as experts in what it means to live with a specific chronic condition. They are heavily invested in knowing everything they can about all aspects of living with — and treating — their condition, and they consume everything they can, from a conversation on social media to a dense clinical paper, Mr. Chateau adds.
“To support patients’ growing responsibility in their own healthcare, pharma should focus on creating programs and materials that clearly communicate — to both physicians and patients simultaneously — all of the necessary, relevant information for understanding a treatment, from clinical benefits and risks to quality of life impact,” Mr. Chateau says.
Not all stakeholders have a clear idea on how to engage meaningfully with patients, according to a 2018 survey published in Health Expectations’ open-sourced, peer-reviewed library. Participants in the survey represented seven categories of stakeholders: policymakers/regulators; healthcare professionals; research funders; payers/purchasers/HTA; patients/patient representatives; pharmaceutical/life-sciences industry; and academic researchers.
There was also confusion as to who is supposed to be setting guidelines and standards for patient engagement. For example, policymakers/regulators were expected by others to drive patient engagement (PE), create a framework and facilitate PE, provide guidelines of good practices, and connect stakeholders, an expectation that was not shared by the policymakers/regulators group. HCPs were seen as the link between patients and other stakeholders, but HCPs did not necessarily share this view. Thus, understanding and aligning stakeholder expectations is a critical barrier for patient engagement.
Overall, interviewees thought that patient engagement should have a higher priority within their group and they did not think that they were doing enough to address the needs of patients.
Interviewees recognized that PE is a key aspect to drug development, but the degree to which they were willing and able to accept an active role in PE differed. In addition, depending on the stakeholder group, there were other concerns that may require more focus than patient engagement, such as cost and clinical effectiveness (payers/policy), medical education and scientific discussion (policy/industry), and the number of people whose quality of life can be improved (policy).
According to a recent Accenture study, patients don’t always wish to work directly with pharma companies. Instead, they would prefer that their patient organization work with pharma on their behalf. This presents an untapped opportunity for pharma to explore new ways to provide integrated services, clinical trial set up and recruitment services, and products that address people’s non-clinical needs, including the social determinants of health.
Another way for pharma to engage with patients is through the use of digital companions, says Omri Shor, CEO and cofounder, Medisafe.
“With the evolution of specialty medications, pharma companies need to support patients managing complex regimens requiring not only additional administrative involvement of getting patients on medication as well as managing through the challenges of new dosing forms,” Mr. Shor says. “Each phase of the patient journey comes with its own challenges and the key to optimal engagement throughout the journey is providing timely support to patients.”
Patient advocate Daniel Garza says these types of collaborations benefit patients on a care level as well as on an emotional support level.
“Because an advocate has taken the time to sit with a pharmaceutical company, asked questions, and found solutions, a patient will be better prepared, feel better about his or her care, and do better physically, mentally, and spiritually,” he says.
This is especially relevant since fewer than half (47%) of patients surveyed by Accenture said that pharma companies understand their emotional, financial, and other needs related to their condition. In fact, patients rate pharma companies lower on these criteria than doctors/physicians, payers, pharmacies, and patient organizations. The biggest gap is in the United States, where 67% say patient organizations understand their needs compared with just 48% who say the same for pharma.
As the industry struggles with the growing trend of patient empowerment and engagement, our patient and corporate thought leaders offer tips on how to effectively build relationships among all of the groups.
Stakeholder Group: Physicians
There have been many conference sessions, articles, and personal anecdotes shared by physicians about how empowered patients are changing the way physicians and patients interact during office visits. Although well-prepared with health information, empowered patients don’t save time for schedule-crunched physicians; they require more time because they ask more questions and they want to be a part of their care decision-making.
“Over the past several years, we have noticed a shift, patients are operating more as a decision-maker by initiating key conversations with their physicians about treatments and trials,” says Jeff Terkowitz, VP of product, Inspire. “This change requires that physicians shift to more of a collaborative decision-making role, focusing on key patient outcomes.”
According to Amy Kehoe, VP strategic planning, Dudnyk, to partner effectively with patients, physicians need to listen. “Ultimately, by listening — truly listening — physicians show how much they really care. Because many times it isn’t just medical care that a patient needs; it’s human care,” she says.
A physician’s role includes listening to the aches, pains, and other medical complaints of the people who walk through their doors, and using that information, combined with their own observations and available tests, to diagnose the patient’s ailments. In the rare disease space, many physicians have taken this one step further and are seeking to engage patients in shared decision-making and to be active participants in their own care.
Ms. Kehoe says she recently spoke to a physician who said: “I do not impose treatments on my patients.” Another physician similarly reminded her that his “goals and my patient’s goals are not always the same. I need to understand my patient’s goals and find a mutually agreeable strategy for care.”
“This is the understanding and approach we seek to champion with all physicians treating rare conditions,” Ms. Kehoe says. “It is critical that physicians listen not only for important medical information, but also for something else — for the deeper, personal impact the disease may be having that is not always as easily broached.”
When physicians truly understand the burden of the disease on patients and can empathize with their many challenges, they may change their treatment recommendation, or even advocate in ways for the patient that they previously had not. At the very least, being active listeners will help them better explain their recommendations in language that the patient can understand and accept, she adds.
Mighty Well, a wellness wear company that creates medical fashion and apparel for patients, recently ran a blog entry called Understanding Physicians’ Perspectives, which reveals an honest and revealing conversation with a doctor who discusses the challenges of dealing with patients — empowered or otherwise. Because it can be difficult for both parties to keep the perspective of the other side in mind, it is so important to remember the human side of both experiences.
A Mighty Well ambassador, who goes by Ziyad, experiences both the patient side and the provider side every day. As a diagnostic radiographer and author of the @thegrumblinggut, Ziyad says at work he always attempts to give patients an opportunity to express themselves and have their voices heard, even if it’s just to have a chat about what is bothering them. Ziyad says he knows from his patient point of view that this helps patients feel like they can take back some control over their disease.
“Mighty Well has seen firsthand that patients are taking an active role in developing relationships with all healthcare stakeholders,” says Emily Levy, CEO and cofounder of Mighty Well.
Ms. Levy offers this advice to patients to help them further develop their relationships with physicians. First, she says, remember that all people have biases. “This doesn’t make us bad people, and doctors are often burnt out and compassion fatigued. It never feels good to encounter bias, but it helps to remember that doctors are people, too,” Ms. Levy says.
Also, bring your research to the appointment. If you anticipate skepticism, bring a printout of research to back you up in case your physician needs reassurance. Having a companion or another advocate with you during the appointment is key.
“Medical PTSD and brain fog can make it tough to be your most assertive, confident self,” Ms. Levy says. “Having someone with you who knows the drill, believes you, and isn’t afraid to speak up, can be a game-changer.” Right after the appointment, have a plan to meet or phone a friend. Consider scheduling time with someone who helps you feel validated and ask them to be available by phone right after the appointment. That way, if it doesn’t go well, you can minimize the emotional impact by decompressing right away. And most importantly, consider giving positive feedback to your physician when it is warranted.
“Consider sending a note when doctors treat you well; be specific about what was helpful,” Ms. Levy says. “It will help them remember what to do the next time, whether for you or someone else, and will raise general awareness bit by bit.”
These are some examples of how patient empowerment is starting to shift how patients engage with their healthcare providers. They want information, convenience, and a seamless relationship that better fits into their lives and health needs.
“Patient empowerment is changing many dynamics, among them the change in the healthcare provider/patient relationship, the ability for consumers to show up more informed, the opportunity to participate with their data, and the ability to proactively find connections and communities with whom they identify,” says Lyn Falconio, chief marketing officer, Publicis Health.
“However, patient empowerment can be a bit of a double-edged sword too,” she says. While empowerment is great, patients have to be empowered with the right information, and unfortunately, there is so much misinformation about healthcare out there. As patients become more empowered and engaged, we will see a rise in better outcomes, but we also need to be prepared to address misinformation.”
Not only can misinformation create a problem, but so can the lack of it. According to Rosamund Round, VP, patient innovation center, Parexel, patients are looking for more relevant information on clinical trials, and are not always finding it.
“Patients are becoming more aware of clinical trials and the potential benefits of participation, though it is often still challenging to access information in an easily digestible format,” Ms. Round says. “Our job now is to make this information as accessible as possible.”
Stakeholder Group: Payers
As patients bear greater responsibility for healthcare costs, they are taking on a more active role in decisions about their health. Because of increased healthcare consumerism, payers are looking for new solutions and even retail-like patient experiences to engage patients throughout their care journey.
“At first glance, the patient-payer dynamic may not be intuitive with issues such as out-of-pocket expenses reinforcing the disconnect as well as questions on why payers should care about patients taking charge of their healthcare decisions,” says Seth Gordon, general manager, Eversana Engage. But in reality, he says payers are focused on increasing plan enrollments while lowering healthcare expenditures, so engaging with today’s empowered patients is critical to their success.
However, the shift toward more patient empowerment has its challenges. While patients are becoming more engaged and actively managing their own healthcare, that care can often be adversely impacted by the many barriers between biopharma, providers, and payers, says Devon Womack, VP of sales and customer engagement, at McKesson Life Sciences.
“Patient access requirements for specialty medications are more numerous, time-consuming, and complicated than traditional pharmaceuticals, with patients often struggling to coordinate therapy on their own,” she says. “While hub services exist to help patients and providers fulfill necessary steps to start specialty therapies, only one in five patients are aware that support is available.”
One way payers can forge relationships with patients is by providing educational information that enables them to better understand their diagnosis –– even if the payers are not directly involved through payment or provider selection, says Richard Stefanacci, D.O., chief medical officer, Eversana Engage.
“From site of care to provider selection to treatment choices, payers gain valuable insight by engaging with patients throughout their treatment journeys,” he says. “Armed with the right tools and information, these in-charge patients are better positioned to make decisions about their healthcare. And their informed decisions can have a positive effect on their outcomes and ultimately lead to requiring less healthcare resources in the long term. If a patient selects a lesser treatment to save money based on misinformation, this will be costly to both the patient and payer over time.”
One way that payers are increasingly supporting patient engagement efforts is through digital health technologies and telehealth, says Jill Lesiak executive VP, creative director, Ogilvy Health.
“Payers are looking to digital apps and artificial intelligence to enhance patient engagement efforts where previously the printed patient education brochure was the sole way of patient outreach,” she says.
Mr. Shor says to mitigate challenges and questions about medication coverage that patients may encounter during initiation, payers may want to consider integrated digital companions that can provide transparency in the authorization and onboarding process.
“While managing complex treatments, resources are available and accessible to patients when specialty pharma companies invest in a mobile platform,” he says. “Capitalizing on digital companions benefits both pharma and patients by aligning them in the medication management process.”
Another way payers are engaging with patients is by investing in community-based health programs, Ms. Lesiak adds. These programs enable payers to meet patients where they are — in their community.
“We are also seeing efforts to make patient engagement more personalized by making it more specific to the individual,” she says. “The use of social determinants of health (SDOH) is becoming increasingly relevant in this space. With a better understanding of SDOH, payers can identify enhanced ways to engage with patients, ultimately helping them to improve patient health and overall wellness.”
Attorney and rare disease patient advocate Candace Lerman advises patients they need to be persistent and adequately inform payers about their circumstances.
“I had to educate my insurance company on the benefits of my off-label treatment,” Ms. Lerman says. “Once I got to the right person, I received approval and the magic happened. Persistence is key when dealing with payers; they put up a lot of layers before you get to the right people.”
In summary, patients have shifted from being historically passive in their treatment and taking the word of medical professionals to being proactive and armed with information and alternatives for their treatment and payment options.
“Stakeholder information, support, and communications — whether the stakeholders are physicians, payers, or pharma — should focus on empowering patients, improving their experiences, and removing obstacles that impact their healthcare,” says Ric Cavieres, president, OZ. “Patients want to be empowered.”(PV)
Patients’ advice to develop better relationships with healthcare stakeholders: physicians, payers, and other patients
Physicians: Please listen to a patient’s concerns with a holistic view in mind. Some diagnoses are difficult to make, and it may take some detective work to understand what someone is going through. Be open minded to some alternative therapies, even as an adjunct.
Ehlers-Danlos Syndromes and Adrenal Insufficiency
Physicians: Even though you might have had bad experiences, not all physicians are bad, not all pharmaceutical companies are cold-hearted… there are reasons why things happen and there are good people. We need to get involved for things to change and to understand how and why things happen.
Fibromyalgia, Chronic Pain and Military Veteran’s Medical Needs
Physicians: To develop better relationships with patients, physicians need to be active listeners, they shouldn’t dismiss patients’ concerns, and they should see patients as equal members of their treatment team. Finally, the most important piece to building a relationship with patients, and achieving better outcomes, is for physicians to see patients as a person first, and as a patient second, when providing treatment. Treating a patient as a person first will help build rapport, trust, and promote the human connection between the physician and patient.
Payers: It is imperative that payers help educate patients on the payer system to support patients with understanding how the payer structure works. It is just as important for the payer to advocate on behalf of patients, to find ways to reduce out-of- pocket healthcare costs for patients, and assist patients with allocating grants/subsidies to pay the cost of the patient’s healthcare and prescribed treatments, along with being a liaison and supporting both patients and physicians with completing pre-authorization forms for prescribed treatments.
Patients: To help build better relationships with physicians, other patients, and payers, patients need to educate themselves on all facets of their medical condition and their patient rights. It is also imperative that patients present information on their illness and concerns in a way that is professional and based on facts versus emotions. Finally, patients need to actively engage in their treatment, ask questions of both their physicians and payers, to better understand their illness and how the payer system works.
Payers: I had to educate my insurance company on the benefits of my off-label treatment. Once I got to the right person, I received approval and the magic happened. Persistence is key when dealing with payers, they put up a lot of layers before you get to the right people.
Cancer Be Glammed
Patients: I have had a unique experience because I have turned my passion into purpose. When I recovered from cancer, I created a company to educate women about the lifestyle challenges of surgery and treatment, and to empower them to recover with dignity, positive self-esteem, and personal style. Through my multimedia platform I am able to advocate to patients, the oncology community, and support organizations. This being said, I believe there has never been a better time for patients to engage with each other and the healthcare community.
Chronic Lymphocytic Leukemia (CLL)
Physicians: I have found that it is most beneficial when physicians speak with patients, not only as true providers of expert information, but also as partners with them in their care. As such, there needs to be dialogue. Physicians need to listen and get to know their patients. I look forward to the day that this happens more frequently than it currently does.
Sharon Rose Nissley
Klippel-Feil Syndrome Freedom
Physicians: It is so important to approach care as a team with patients. Especially with rare disease when patient data is lacking, we are your data. Believe us. Don’t forget about us when you leave the room, we’re still living it. Have mutual respect. We aren’t trying to give you a hard time, we are having a hard time. In my experience, relationships often begin when doctors ask patients a bit about themselves beyond their rare disease. Just recently, I bumped into an old doctor of mine that I haven’t seen in several years. He is extremely busy. He saw me, came forward, and said “Sharon!” greeting me with a smile and a big hug. He knew my name. He made an effort to engage rather than turn the corner. He broke the invisible wall. Do that.
Payers: Payers need to put the human aspect front and center. Currently, three medications that I have been prescribed are out of reach due to drug shortages or because I can’t afford them. Rare patients often fight for every medication, test, and procedure that is outside of the norm. As a patient, the stressful, exhausting, never-ending insurance battle defeats the very purpose of seeking treatment to improve life.
Patients: Peer support groups are often one of the only places people can share what they are truly going through without judgment, and where they are met with understanding, compassion, constructive suggestions, or simply a listening ear. Irreplaceable bonds are made through people who have a rare disease in common.
Patient Advocate and Consultant
Musculoskeletal Diseases, Inflammatory Bowel
Disease, Pancreatic Cancer
Patients: Patients are experts in their own health and well-being and have a right to be involved in anything relating to their health, care, and wellbeing, including the future of what that care will look like.
10 Patient Engagement Strategies for Healthcare Stakeholders
Develop and implement patient
engagement policies and procedures
Develop a patient engagement framework
Create a culture of patient engagement
Leverage healthcare technology
Educate patients and healthcare providers
Create touch points during patient visits
Employ incentives and rewards
Engage patients as part of the healthcare team
Measure progress and make changes
Source: Acuma Health