Why does Patient Outreach seem so Out of Reach

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Healthcare providers are eager to improve the ‘patient experience’ and, wonderfully, many companies and organisations are stepping up to identify patients’ diverse needs and develop novel products and services that improve the quality of their lives while they receive treatment. And yet, as the co-founder of a company providing award-winning, specially adapted clothing for patients, I believe that misguided protectiveness by healthcare professionals and patient-support groups is preventing life-enhancing products from reaching those that could benefit from them.

Indeed, I fear that by maintaining the traditional – and often well-intentioned – information white-out around patients, many excellent solutions that tangibly improve patient wellbeing will fail and new products will not be developed, which in turn will result in a failure of our duty of care to patients.

A shift in the mindset around ‘marketing’ to patients is necessary in order to better serve patients’ interests. We need to trust them (and their loved ones) to decide for themselves what products will make their lives a little – or even a lot – easier, and allow companies such as ours, INGA Wellbeing, to inform them about available products and hear their requests for new ones. In other words: to improve the patient experience and encourage fast-paced innovation, patients should not be placed out of reach! They should be part of the conversation.

Of course, you might be tempted to dismiss my concerns and recommendations as self-serving and … in a way … you would be right, but please … hear me out.

I certainly want my young startup to survive and grow but not because I am seeking to line my own pockets from others’ misfortune, but because our uniquely normal-looking men’s and womenswear was created to avoid others having to suffer the indignities of inadequate clothing which my mother experienced during treatment for breast cancer. I know how and why our innovation works. My motivation is therefore indeed deeply personal! And, as such, it is frustrating to know that many patients will struggle with issues that can be, or have already been, solved because of a combination of nervousness and long-held procedure in the healthcare sector dictating the ‘appropriateness’ of approaching patients as consumers.

The problem that I – and other entrepreneurs in the healthcare sector – experience time and again is that while many healthcare practitioners are happy to pass on details of charitable offerings, they often view commercial providers with scepticism and keep a protective wall of silence around their patients. But filtering information for patients is not supporting them. In fact, it is hurting them by reducing interest and incentive for innovation.

Commercial products should not be viewed as ‘profiting from patients’ but rather it is important to recognise that, by applying a sustainable economic model instead of kind-hearted handouts, they are ensuring that patients’ needs are met well into the future and that there will be continued innovation. ‘Patient outreach’ and ‘market access’ should not be considered dirty words for healthcare entrepreneurs to whisper and be ashamed about, but rather discussed openly with healthcare providers in the best interests of patients.

Indeed, each time our clothing wins an award for its design or is appreciated by patients or nurses for the ease of access it offers, I reflect on how much better my mother would have felt if she had had clothing that helped her to maintain her dignity, stay independent; be comfortable and keep moving. At the time, I was at a loss as to how to help her as, like most people, I had to first learn the ropes of the medical world in which we suddenly found ourselves. Challenges would present themselves and time and again we would look around the waiting room and on patient support organisation websites, or ask nurses and counsellors for a solution and information would slowly trickle but never flow. Now, with hindsight (and sadly too late to be of any help), I have discovered that some solutions did in fact exist but well-meaning medical and hospital management professionals had determined not to ‘overwhelm’ my mother (and her entourage) with too much choice or ways to spend her money at a worrying time. Well-intentioned indeed but, I would also argue misguided. We needed, wanted, and were looking for options. It would, I think, have been much kinder to have let us know that options existed and let us decide if they were appropriate for us.

So how do we ensure that patients, along with their friends and family, are able to quickly find out about existing products or services that address the problems they are experiencing? How do we both help to improve patients’ quality of life and support innovation in the healthcare sector?

The answer is clearly not simple or it would have been addressed before now, but I think it starts by not seeing patients as helpless victims but rather as individuals seeking solutions; as partners with the expert medical team; and, as able to help determine and take care of their own wellbeing. Give them information and then trust them to make informed decisions. In this modern age – with medical websites, online patient fora, powerful search engines and patient platforms such as livebetterwith in the UK or Oncovia in France – patients are, in any case, becoming more knowledgeable, empowered and demanding. Healthcare providers should not resist but rather embrace this change and help patients to improve their own patient experience, thereby enhancing their own efforts.

So, what concretely do I think is necessary to better support patient-focussed companies, innovation, and thus patients? Well, I would like to see:
• healthcare providers allowing flyers for commercial products and services in their waiting rooms;
• annual exhibition days held in hospitals where commercial companies can sign up to present their products to nurses in order that they better understand how they work and their benefits;
• A useful links section on healthcare providers’ and patient support groups’ websites where useful products and services are added to a list with hyperlinks to the appropriate website;
• More independent reviews of patient-focussed products and services by specialist review organisations, such as the star rating applied by Able Magazine.
• More curated, patient-focussed one-stop-shops – both online and on high streets – that bring together the best of the existing solutions and trawl constantly for new innovations.
• Regular, dedicated discussion of new healthcare products and service on health-related radio and television programme.

In the meantime, we at INGA Wellbeing refuse to allow the well-meaning ‘system’ to hide our clothes from those that need them just because we are a commercial company, and are eager to fulfil our social mission by finding common cause with patient groups; offering a discount for their members and a portion of every sale as a donation. In return, all we ask is that they inform their members about INGA Wellbeing’s clothing collection, which was after all designed specifically with the intention of improving the patient experience! A win-win for all involved and proof, surely, that patient outreach need not be out of reach.

(Claire Robinson is a co-founder of patient clothing company INGA Wellbeing www.ingawellbeing.com. She can be reached at claire@ingawellbeing.com)

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