Blog - Industry

Social Distancing? Not in Specialty Patient Support Communities

by Yishai Knobel,

Specialty patients’ success on treatment relies heavily on the care and attention they receive. Chronic conditions and complex treatment protocols require multiple layers of support to help patients stay on track and optimize their treatment outcomes. High-touch support is even more necessary in a global pandemic. But with mandatory and voluntary social distancing impacting all of our lives, access to this type of personalized support is harder than ever.

Every disease and treatment pathway is unique, as are the questions and concerns within each specialty patient population. Chat forums on web or mobile allow patients to seek answers and share experiences within a community, when very little physical community is available. Providing patients and caregivers with a discussion forum specific to their situation helps them feel less alone in their journey, and more connected to others in a similar situation.

Before the pandemic made physical meetings difficult, the medical care team provided support in areas of access, affordability, education and other specialty treatment or rare disease considerations. However, preparing a patient or caregiver for daily tasks is not easy, especially when experiences can vary widely between patients. Peer-to-peer community support helps by providing engagement with others going through similar journeys and by learning together as a group.

The power of community support is critical, especially when it comes to discussions around COVID-19. Specialty patients have had a wrench thrown into their already complex journeys, with fear and uncertainty elevated across patient populations, and those dealing with chronic diseases more stressed than ever. While healthcare providers are striving to ease those concerns, patients also want to understand and learn how their peers are approaching and handling this evolving situation.

Adapting community dialogue for COVID-19

Taking advantage of the increase in social media and mobile usage

With many communities on lockdown, the use of social media and mobile apps to stay connected has skyrocketed in recent weeks—so much that social media companies like Facebook are struggling to keep their services steady and reliable. In fact, the social media giant reported an increase of more than 50% in total messaging on its platform in March alone. 

Social media usage as a percentage of total mobile app usage among U.S. adults has seen a significant spike overall—from 20 percent in early March to 25 percent in mid-April. It’s likely that app usage will only continue to increase, as individuals and communities continue to rely on networking apps to stay connected during the slow re-opening of different parts of the economy.

Fortunately, the one place where social distancing is not needed is social platforms. And for specialty patients, it’s one place where they can continue to get encouragement and support, keeping them on treatment and staying as healthy as possible.

Helping the most vulnerable

HelpAround has several communities serving different treatments and diseases, all powered by our mobile app. In addition to the high level of peer support HelpAround typically sees across our treatment-specific community forums, we are also seeing increased communication and support around how to navigate life changes related to COVID-19. 

Several populations across the chronic disease spectrum have elevated risk associated with COVID-19. Many chronic conditions index towards older populations, and beyond that, some populations are immunocompromised, such as those with oncological or immunological diseases, transplants or other rare diseases. Within these groups, prevention from infection is top of mind.

As a result, HelpAround communities show marked increases in dialogue since COVID-19 took center stage. Since March, one of HelpAround’s patient communities has averaged 8 responses for each comment or question posted—one indicator of the increased levels of camaraderie we’ve seen across the board. CaredFor, an online platform for Addiction Treatment Centers to connect and engage their alumni, has similarly seen a 40 percent increase in app logins in March, along with a 200+ percent increase in private messages between users and 38 percent increase in post reactions and engagements.

Areas of Increased Dialogue

Beyond increased engagement, HelpAround is also seeing a couple trends in types of dialogue. In a community where treatment is conducted at home and ancillary supplies are required, patients and caregivers are offering tips on procuring supplies amongst each other. Some are even sharing supplies for emergency situations such as power outages. 

Another common discussion topic is how to modify your lifestyle to minimize exposure risk. Here, we see a lot of sharing of best practices for venturing into public spaces, or offering services that help you stay home. 

One growing trend is general encouragement. There is an increased sense of “our community is in this together,” and as a result, many community members are creating a much-needed sense of positivity. In one specialty patient community focused on a therapy that requires frequent trips to an infusion center, a patient hesitant to make the trip was encouraged by another who said,

“I pray that you and your family are doing well during this pandemic. Please be extra careful while at your treatment center.”

Another re-emphasized his thankfulness for the ability to pursue treatment at home:

“Hi guys, I am so glad that we are doing treatment at home, especially now with COVID-19 going on… Wish you all well, and be safe if you have to go out.”

Some of our communities have moderators to help guide discussions and respond to FAQs. HelpAround has found the moderator role to be very useful during these challenging times when additional uncertainty has been added. Forum moderators are able to guide patients to needed resources or additional support tools.

Lastly, the value of the peer support community is increasing in chats, as patients are talking about the positive impact on their lives provided by their patient community. This feedback is powerful because it encourages others to participate in the dialogue, further strengthening the impact and reach of the community.

What type of peer support makes sense for you?

Providing patients with mobile community support can be done using two approaches. 

One method is to provide a single community environment where any patient or caregiver can participate in the dialogue. A key benefit to this approach is visibility into many different patients’ perspectives. A common concern to this approach is adverse event identification and reporting. However, a moderator can help solve this. The role of a moderator is helpful in monitoring the community, driving patient engagement and acting as a resource. In the majority of the moderated communities HelpAround supports, the moderator has a clinical background. 

A more targeted approach to community support is peer-to-peer matching. Here, patients or caregivers are matched based on specified criteria instead of being in a single, large community,. This allows for patients to have a 1-on-1 dialogue with someone in a similar situation. Matching can be based on several factors: age, location, time on therapy or any other therapy-specific attribute. In some cases, new patients are matched with experienced patients, providing a mentor relationship in the critical first weeks of treatment.. 

What would work best for you? Leave your thoughts in the comments.

Read more

COVID-19 Opportunities to Improve Specialty Patient Experience

by Yishai Knobel,

COVID-19 is quickly and dramatically changing our world. The healthcare industry is the tip of the spear in fighting the pandemic, but the industry is also experiencing some of the most rapid and far-reaching changes. For specialty pharma, our response to the new normal and the needs of our patients will determine success or failure in this very challenging season.

Drug Channel’s Adam Fein released a three part series named Coronavirus Industry Impact on the specialty pharmaceutical segment, based on a survey of specialty pharma leaders, covering many facets, including supply chain, warehousing, retail vs mail-order, providers, and payers.

But not much is being said about how this is impacting the patient experience, specifically the specialty patient experience that traditionally involves a multitude of touchpoints. At HelpAround, our mission is to make patients’ lives easier, so we wanted to share some observations from the patient’s perspective.

Patient Experience Challenges

Continuity is a popular buzzword right now: business continuity, leadership continuity, financial continuity, economic continuity…. For specialty pharma, Patient Continuity refers to how patients are able to stay in touch with healthcare workers when traditional communication channels are eliminated or severely constrained.

This raises a few questions for patients:

  • Is my prescribing physician still available?
  • Should I look into backup pharmacies?
  • Can I order a refill for home delivery?
  • Is my insurance going to change?  How is the cost of the drug going to change?
  • Should I hoard medical supplies?
  • My caseworker is suddenly unavailable – where do I find answers and information?

Even the providers (clinics, pharmacy, hubs, payers) are encountering challenges, including:

  • Adapting to remote working
  • Navigating disruptions to healthcare facilities due to reconfiguration for virus protocols
  • Maintaining staffing levels at call centers due to child care needs

What will these challenges look like in the short and long term? How can patients interact with the specialty pharma ecosystem in a way that is convenient, easy, and secure in this new era? How will we provide continuity to patients?

Patient Experience Opportunities

Many of the pandemic challenges are being addressed through technology. Industries around the world are adopting digital channels for both internal and external communication because, frankly, what choice do they have? Within specialty pharma, Adam Fein says, “This has the potential to spark a wave of technology and HUB/SP call centers will shift to more digital friendly engagement.”

Over the past few years we have seen many technology solutions for specialty pharma. Almost all of the successful ones connect back office systems to make transactions faster or cheaper. These include solutions that digitize traditionally analog transactions such as prescriptions, prior authorizations, and copay programs. These improvements impact the patient experience, but indirectly.

The patient-facing hub industry often markets a web interface as a technological solution. However, this falls into a trap that Neal Khosla described: “The industry’s dirty little secret is that ‘tech enabled service’ means ‘service where we built some software that hardly makes a difference.’ They still have a person doing most of the talking directly to the patient.”

To be fair, this is not unique to specialty pharma. Khosla also says, “Investors have poured over $30B into digital health since 2011 but what material change can we point to in health care costs or the experience of the average patient?”

How can we take advantage of this opportunity to improve the specialty patient experience in the current global pandemic and beyond?

We See Three Opportunities

1 – Reformed Regulation on Technology

The difficulties that the healthcare regulatory environment creates for innovation are many. Change has been slow, and often for good reason — protecting the patient is paramount. However, there is agreement on many fronts that regulations should be better suited for our current digital world, but changes have been slow. Nikhil Krishnan explains (in his comic style) how regulations are changing with less resistance in the current environment. “Right now, multiple issues in the healthcare system have been exposed extremely quickly and everyone is interested in fixing them simultaneously. It’s also a time where if you’re an interest group pushing back against a law, you look like a huge asshole. So passing a lot of temporary regulations that are common sense is getting very little pushback.”

HHS unleashed a surge of telehealth innovation by announcing their relaxation of enforcement for non-HIPAA-compliant communication platforms. “Covered healthcare providers may use popular applications that allow for video chats, including Apple FaceTime, Facebook Messenger video chat, Google Hangouts video, Zoom, or Skype, to provide telehealth without risk that OCR might seek to impose a penalty for noncompliance with the HIPAA Rules related to the good faith provision of telehealth during the COVID-19 nationwide public health emergency.”

eSignature and eConsent can be the standard, not the exception

The adoption of consumer tele-conferencing has been broad and swift, with two main advantages. First, workers and patients are learning technology tools in an immersive environment. When there are no alternatives, even the most reluctant are using the tools and increasing their technological aptitude.

Second, procedures and processes are being edited and adapted for technology. For example, exchanges of papers and pens, even in clinical environments or through the mail, carry risks of virus transmission. So when a form can be signed on a patient’s personal device, the anti-viral benefits make the digital solution the first choice.

Will this last after social distancing is behind us? We don’t know, though Krishnan notes that “We’ve already seen huge spikes in usage of Chinese telemedicine platforms + willingness to try more digital tools in the future.” So yes, probably.

2 – Friendlier Payers and PBMs

The fee-for-service world of US healthcare often makes industry cooperation difficult. Value-based care is starting to chip away at these barriers, and the current environment now makes any resistance to multilateral cooperation a public relations nightmare. Fein notes that “Many respondents expect that the coronavirus pandemic will tarnish the reputations of pharmacy benefit managers (PBMs) and insurance companies. Unsurprisingly, the only group that disagreed with this assessment were the respondents from PBMs, health plans, insurers, and plan sponsors.” 

Much of this disagreement comes from examples like copay accumulators that appear to only bring benefits to part of the ecosystem while adding complexity. We can hope that future changes will have more benefits to the patient and the ecosystem overall.

Krishnan brings up a change that requires cooperation and is starting to gain traction — skipping prior authorizations. It is a complicated issue, and he summarizes the pain points well. “Doctors hate them because they feel like they have to jump through hoops just to appease the insurance companies, but insurance companies use them to make sure doctors try cheaper but cost-effective alternatives first. Unfortunately it’s a huge hassle for everyone and there are entire administrative layers built just to handle prior authorizations on both sides.” 

He proceeds by connecting that idea to doctor scoring and offers a wonderful rumor: “It would be cool if reputable doctors (via the legitimacy scoring?) could skip prior authorizations. I’ve heard some insurance companies potentially building products like this.” These types of innovations would indeed make the specialty pharma experience less complicated for all involved, including the patient.

3 – Healthcare Embracing Agile

The last area where the crisis can help is healthcare embracing agility. We are seeing incredibly rapid responses to problems driven by companies that have agile mindsets, with examples like Tesla, Dyson, and several others providing solutions to the ventilator shortage problem in days. Many of the genetic pharma companies — often built like agile technology companies –are finding ways to shorten the time it takes to find treatments and/or a vaccine.

In the age of COVID-19, agility is about survival. If you don’t adapt quickly, people and businesses will die. The experience of the Seattle Flu Study in the New York Times is a great example of how agility helped save lives despite the regulations in place. The article notes “But the Seattle Flu Study illustrates how existing regulations and red tape — sometimes designed to protect privacy and health — have impeded the rapid rollout of testing nationally, while other countries ramped up much earlier and faster. Faced with a public health emergency on a scale potentially not seen in a century, the United States has not responded nimbly.”

Healthcare has been slow to adopt this mindset, and is reluctant to accept it in vendors. The regulatory environment and the need to “do no harm” are limiting factors. However, there are many ways to be more agile while not sacrificing the foundations of healthcare.

We have seen some recent agile examples such as GSK and Sanofi partnering for vaccine research and J&J cooperating with BARDA to quickly and significantly increase their vaccine production capacity; however most of these are around sharing Intellectual Property rather than using agile technology to significantly change existing processes.

Khosla notes in his conclusion that healthcare needs to “allow companies to test and iterate fast in a responsible way.” He goes on to develop this idea further, mentioning ideas such as developing sandboxes for fast and responsible iterations and focusing on helping innovative companies develop products, not testing perfect ones.

Adoption of these ideas will make improvements faster to implement and improve, with the patients reaping most of the benefits.

Summary

COVID-19 has given the industry opportunities to change the specialty patient experience, especially through technology. This can be helped by the revision of regulations, higher cooperation within the industry, and embracing more of an agile mindset to improve the speed of innovation.

We believe specialty patients will see dramatic improvements in their experience through technology. How much and how fast are the only questions.

Read more

Making the Patient’s Life Easier

by Yishai Knobel,

We all know that specialty medication presents a unique set of challenges for the patient. Just receiving the first dose is met with difficulty for up to 60% of patients.2 The specialty pharmaceutical industry is doing some really good work to address the needs of patients while staying compliant.

We thought you would be interested in the what we learned from several recent reports.

CoverMyMeds released two reports that identify the pain points for patients of specialty treatments, and then explain how technology can simplify the processes. (Medication Access Report and Specialty Patient Support Report)

Pharmaceutical Commerce published their 2020 Patient Support / Hub Services Report and goes more in depth on patient-centric improvements.

We read them and summarized the findings that we think will be most applicable to Specialty Patient Experience.

Patient Pain Points

From 2020 Patient Support / Hub Services Report

The CoverMyMeds report used a survey of over 500 patients to quantify some of the difficulties patients still encounter with specialty medications. These areas stand out to us.

  • Difficult or Very Difficult – 60% of specialty medication patients had some difficulty in receiving their first dose of therapy – nearly a third described their experience as difficult or very difficult.2
  • Three hours and five phone calls – Over one third of these patients spent more than three hours of personal time completing steps required just to start their specialty therapy, and made five or more phone calls to various healthcare stakeholders.2
  • What support services? Nearly 40 percent were unaware of what support services were available, where to find them, or who to ask.2

Factors Impeding Progress

Both reports highlight the reasons these patient issues persist.

  • Hub programs are most impactful within two to three years of specialty product launches, limiting the incentive to automate manual processes and standardize workflows within the traditional hub model.3
  • Hub programs were designed to sit at the center of the healthcare ecosystem and unite all the stakeholders necessary to start patients on specialty therapies. However, broken connections can leave patients without their medications or struggling to find answers on their own.3
  • Direct interaction with patients in open forums might be a bridge too far for most pharma companies; they are continually balancing their interactions with patients with the restrictions imposed by regulatory compliance.1

Areas of Improvement

From 2020 Patient Support / Hub Services Report

The reports also illustrate some of the trends that are giving us hope that the industry is making improvements.

  • Online and Mobile – Giving patients insight into the status of their specialty prescriptions through online or mobile resources promotes efficient care, reduces uncertainty and helps avoid unnecessary phone calls to healthcare stakeholders.3
  • Visibility and Transparency – By empowering patients with visibility and transparency, prescription abandonment and medication non-adherence numbers trend downward.3
  • Text & Email Reminders – Tech-enabled tools that remind patients to take their medications or refill prescriptions help a lot. By reaching patients where they live, care coordinators can remain in contact through preferred communication channels and provide assistance when needed. Open dialogue that is efficient and accessible is shown to improve adherence to medications.3
  • Wholistic Solutions – End-to-end solutions that incorporate integrations and acquisitions are improving outcomes. When tech-enabled patient services are provided by a single source, the patient wins. “…the patient has a better experience from enrollment, financial support, dispensing and longterm engagement. The better experience from this can result in better outcomes.”1
  • Mobile Growth – The trend toward use of mobile technology to interface with patients, both as a means of communicating messages to them, and to gather patient-reported outcomes (PROs) from them, is growing. And that is a good very thing, both for patients and providers.1
  • Community Support – We know that community is important, but these reports show that moderated patient communities are solving real problems. Patients who are taking the same drug—or suffering the same disease state—are finding and helping one another, sharing experiences and information, and improving outcomes – all under the care of expert moderators. “Imagine if patients on a therapy could join a group of their peers, moderated by experts from a pharma company, to talk about their treatment,” says Valerie Sullivan1

We look forward to watching these trends ease the pain of the patient, lower costs, and improve outcomes.

12020 Patient Support / Hub Services Report
2Medication Access Report
3Specialty Patient Support Report

Read more